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1. Key issues for stakeholder engagement in the development of health and healthcare guidelines

Author

Petkovic, Jennifer, Magwood, Olivia, Lytvyn, Lyubov, Khabsa, Joanne, Concannon, Thomas W., Welch, Vivian, Todhunter-Brown, Alex, Palm, Marisha E., Akl, Elie A., Mbuagbaw, Lawrence, Arayssi, Thurayya, Avey, Marc T., Marusic, Ana, Morley, Richard, Saginur, Michael, Slingers, Nevilene, Texeira, Ligia, Ben Brahem, Asma, Bhaumik, Soumyadeep, Bou Akl, Imad, Crowe, Sally, Dormer, Laura, Ekanem, Comfort, Lang, Eddy, Kianzad, Behrang, Kuchenmüller, Tanja, Moja, Lorenzo, Pottie, Kevin, Schünemann, Holger, and Tugwell, Peter

Published
2023
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2. Establishing a Core Outcome Measure for Peritoneal Dialysis-related Peritonitis: A Standardized Outcomes in Nephrology—Peritoneal Dialysis Consensus Workshop Report

Author

Shen, Jenny I, Cho, Yeoungjee, Manera, Karine E, Brown, Fiona, Dong, Jie, Sahlawi, Muthana Al, Acevedo, Rafael G, Htay, Htay, Ito, Yasuhiko, Kanjanabuch, Talerngsak, Nessim, Sharon J, Ngaruiya, Grace, Piraino, Beth, Szeto, Cheuk-Chun, Teitelbaum, Isaac, Amir, Noa, Craig, Jonathan C, Baumgart, Amanda, Gonzalez, Andrea M, Scholes-Robertson, Nicole, Viecelli, Andrea K, Wilkie, Martin, Tong, Allison, Perl, Jeffrey, Committee, SONG Executive, Craig, Jonathan, Wang, Angela, Hemmelgarn, Brenda, Manns, Braden, Wheeler, David, Gill, John, Tugwell, Peter, Pecoits-Filho, Roberto, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang, Group, SONG-PD Steering, Johnson, David W, Brown, Edwina, Brunier, Gillian, Manera, Karine, Mehrotra, Rajnish, Dunning, Sue-Ann, Dunning, Tony, Group, SONG-PD Infection Expert Working, Perl, Jeff, Szeto, CC, Forfang, Derek, Gomez, Rafael, Nessim, Sharon, Shen, Jenny, Committee, SONG Coordinating, Martin, Adam, Bernier-Jean, Amelie, Gonzalez, Andrea Matus, Viecelli, Andrea, Ju, Angela, Teixera-Pinto, Armando, Sautenet, Benedicte, Hanson, Camilla, Guha, Chandana, Sumpton, Daniel, Hannan, Elyssa, O’Lone, Emma, Au, Eric, Kerklaan, Jasmijn, Dunn, Louese, Howell, Martin, Nataatmadja, Melissa, Evangelidis, Nicole, Natale, Patrizia, Cazzolli, Rosanna, Anumudu, Samaya, Carter, Simon, Gutman, Talia, and Vastani, Thomas Vastani Rahim

Subjects
Health Services and Systems, Biomedical and Clinical Sciences, Clinical Sciences, Health Sciences, Clinical Research, Clinical Trials and Supportive Activities, Neurodegenerative, core outcome measure, peritoneal dialysis, peritonitis, trial design, SONG-PD Infection Workshop Investigators, Biomedical and clinical sciences, Health sciences
Abstract

IntroductionPeritoneal dialysis (PD)-related peritonitis is one of the leading causes of discontinuation of PD and is considered a critically important outcome for patients on PD. However, there is no universally accepted method of measuring this outcome in clinical trials.MethodsWe convened an online consensus workshop to establish a core outcome measure for PD-related peritonitis in clinical trials.ResultsA total of 53 participants, including 18 patients and caregivers, from 12 countries engaged in breakout discussions in this workshop. Transcripts were analyzed thematically. We identified the following 3 themes: (i) feasibility and applicability across diverse settings, which reflected the difficulty with implementing laboratory-based measures in resource-limited environments; (ii) ensuring validity, which included minimizing false positives and considering the specificity of symptoms; and (iii) being meaningful and tangible to patients, which meant that the measure should be easy to interpret, reflect the impact that symptoms have on patients, and promote transparency by standardizing the reporting of peritonitis among dialysis units.ConclusionA core outcome measure for PD-related peritonitis should include both symptom-based and laboratory-based criteria. Thus, the International Society for Peritoneal Dialysis (ISPD) definition of peritonitis is acceptable. However, there should be consideration of reporting suspected peritonitis in cases where laboratory confirmation is not possible. The measure should include all infections from the time of catheter insertion and capture both the rate of infection and the number of patients who remain peritonitis free. A core outcome measure with these features would increase the impact of clinical trials on the care and decision-making of patients receiving PD.

Published
2022

3. Factors to Consider During Identification and Invitation of Individuals in a Multi-stakeholder Research Partnership

Author

Parker, Roses, Tomlinson, Eve, Concannon, Thomas W., Akl, Elie, Petkovic, Jennifer, Welch, Vivian A., Crowe, Sally, Palm, Marisha, Marusic, Ana, Ekanem, Comfort, Akl, Imad Bou, Saginur, Michael, Moja, Lorenzo, Kuchenmüller, Tanja, Slingers, Nevilene, Teixeira, Ligia, Dormer, Laura, Lang, Eddy, Arayssi, Thurayya, Greer-Smith, Regina, Brahem, Asma Ben, Avey, Marc, and Tugwell, Peter

Published
2022
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4. Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Author

Tong, Allison, Manns, Braden, Wang, Angela Yee Moon, Hemmelgarn, Brenda, Wheeler, David C, Gill, John, Tugwell, Peter, Pecoits-Filho, Robert, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang C, Levin, Adeera, Thompson, Aliza, Perkovic, Vlado, Ju, Angela, Gutman, Talia, Bernier-Jean, Amelie, Viecelli, Andrea K, O’Lone, Emma, Shen, Jenny, Josephson, Michelle A, Cho, Yeoungjee, Johnson, David W, Sautenet, Bénédicte, Tonelli, Marcello, Craig, Jonathan C, Investigators, SONG Implementation Workshop, Craig, Jonathan, Wang, Angela, Wheeler, David, Pecoits-Filho, Roberto, van Biesen, Wim, Winkelmayer, Wolfgang, Sinha, Aditi, Ong, Albert, Denny, Alexis, Dart, Allison, Eddy, Allison, Kelly, Amy, Viecelli, Andrea, Davenport, Andrew, Narva, Andrew, Sharma, Ankit, Warrens, Anthony, Chapman, Arlene, Teixeira-Pinto, Armando, Kelly, Ayano, Murphy, Barbara, Sautenet, Benedicte, Padilla, Benita, Canaud, Bernard, Pullin, Brian, Schiller, Brigitte, Robinson, Bruce, Hanson, Camilla, Hawley, Carmel, Logeman, Charlotte, Lok, Charmaine, Wanner, Christoph, Herzog, Chuck, Rutherford, Claudia, Ahn, Curie, Sumpton, Daniel, Rosenbloom, David, Harris, David, Baron, David, Johnson, David, White, David, Gipson, Debbie, Fouque, Denis, Eilers, Denise, Bockenhauer, Detlef, O'Donoghue, Donal, Chen, Dongping, Dunning, Dyke, Brown, Edwina, Bavlovlenkov, Elena, Mannon, Elinor, Poggio, Emilo, O'Lone, Emma, Chemla, Eric, Dobbels, Fabienne, Zannad, Faiez, Caskey, Fergus, Tentori, Francesca, Hurst, Frank, Schaefer, Franz, and Wong, Germaine

Subjects
Clinical Trials and Supportive Activities, Kidney Disease, Clinical Research, Comparative Effectiveness Research, Renal and urogenital, Generic health relevance, Good Health and Well Being, Consensus, Endpoint Determination, Humans, Randomized Controlled Trials as Topic, Renal Insufficiency, Chronic, Research Design, Stakeholder Participation, Treatment Outcome, core outcome sets, implementation, kidney disease, outcomes, patient-centered care, trials, SONG Implementation Workshop Investigators, Clinical Sciences, Urology & Nephrology
Abstract

There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes.

Published
2018

5. Establishing Core Outcome Domains in Hemodialysis: Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop

Author

Tong, Allison, Manns, Braden, Hemmelgarn, Brenda, Wheeler, David C, Evangelidis, Nicole, Tugwell, Peter, Crowe, Sally, Van Biesen, Wim, Winkelmayer, Wolfgang C, O'Donoghue, Donal, Tam-Tham, Helen, Shen, Jenny I, Pinter, Jule, Larkins, Nicholas, Youssouf, Sajeda, Mandayam, Sreedhar, Ju, Angela, Craig, Jonathan C, Collins, Allan, Narva, Andrew, Sautenet, Benedicte, Powell, Billy, Hurd, Brenda, Barrett, Brendan, Schiller, Brigitte, Culleton, Bruce, Hawley, Carmel, Pollock, Carol, Lok, Charmaine, Wanner, Christoph, Chan, Christopher, Weiner, Daniel, Harris, David, Johnson, David, Rosenbloom, David, Rifkin, Dena, Bookman, Deshia, Brown, Edwina, Bavlovlenkov, Elena, Tentori, Francesca, Williams, Jack, Schell, Jane, Flythe, Jennifer, Ix, Joachim, Raimann, Jochen, Andress, Joel, Agar, John, Daugirdas, John, Gill, John, Kusek, John, Polkinghorne, Kevan, Abbott, Kevin, Usyvat, Len, Krishnan, Mahesh, Tonelli, Marcello, Marshall, Mark, Gallagher, Martin, Germain, Michael, Walsh, Michael, Zappitelli, Michael, Josephson, Michelle, Burrows, Nilka Rios, Houston, Orlando, Kerr, Peter, Kotanko, Peter, Roy-Chaudhury, Prabir, Morton, Rachael, Mehrotra, Raj, van den Dorpel, Rene, Suri, Rita, Wald, Ron, Apata, Ronke, Gibson, Shalia, Evered, Sharrilyn, Fadem, Stephen, McDonald, Stephen, Holt, Steve, Kee, Terence, Wheeler, David, Harris, Tess, and Winkelmayer, Wolfgang

Subjects
Bioengineering, Comparative Effectiveness Research, Kidney Disease, Assistive Technology, Generic health relevance, Good Health and Well Being, Humans, Kidney Failure, Chronic, Nephrology, Outcome Assessment, Health Care, Renal Dialysis, Clinical research, consensus, hemodialysis, outcomes, standardized reporting, core outcome set, research quality, research priorities, patient-centered care, nephrology research, workshop report, end-stage renal disease, SONG-HD Investigators, Clinical Sciences, Public Health and Health Services, Urology & Nephrology
Abstract

Evidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient centered. The Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Key stakeholders including 8 patients/caregivers and 47 health professionals (nephrologists, policymakers, industry, and researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations, flexibility to consider evolving priorities over time, deconstruction of language and meaning for conceptual consistency and clarity, understanding of potential overlap and associations between outcomes, and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive, and validated outcome measures that could be used in clinical care (quality indicators) and trials (including pragmatic trials) and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment and improved patient outcomes.

Published
2017

6. Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance ‘Top 10s’

Author

Onderzoek, Crocker, Joanna C., Moore, Lucy, Ogden, Margaret, Crowe, Sally, Khan, Maaz, Schoemaker, Casper, Roy, Noémi B.A., Taylor, Mark, Gronlund, Toto, Bueser, Teofila, Tatum, Madeline, Davies, Benjamin, Finlay, Teresa, Onderzoek, Crocker, Joanna C., Moore, Lucy, Ogden, Margaret, Crowe, Sally, Khan, Maaz, Schoemaker, Casper, Roy, Noémi B.A., Taylor, Mark, Gronlund, Toto, Bueser, Teofila, Tatum, Madeline, Davies, Benjamin, and Finlay, Teresa

Published
2024

7. Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance 'Top 10s'.

Author

Crocker, Joanna C., Moore, Lucy, Ogden, Margaret, Crowe, Sally, Khan, Maaz, Schoemaker, Casper, Roy, Noémi B. A., Taylor, Mark, Gronlund, Toto, Bueser, Teofila, Tatum, Madeline, Davies, Benjamin, and Finlay, Teresa

Subjects
RESEARCH funding, RESEARCH evaluation, MEDICAL care, THEMATIC analysis, CAREGIVERS, MEDICAL research, PRIORITY (Philosophy), QUALITY of life, MEDICAL screening, STAKEHOLDER analysis
Abstract

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision‐making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods: Our analysis included 'Top 10' research priorities produced by UK‐based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top‐level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings. [ABSTRACT FROM AUTHOR]

Published
2024
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10. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery

Author

Tong, Allison, Baumgart, Amanda, Evangelidis, Nicole, Viecelli, Andrea K., Carter, Simon A., Azevedo, Luciano Cesar, Cooper, Tess, Bersten, Andrew, Cervantes, Lilia, Chew, Derek P., Crowe, Sally, Douglas, Ivor S., Flemyng, Ella, Elliott, Julian H., Hannan, Elyssa, Horby, Peter, Howell, Martin, Ju, Angela, Lee, Jaehee, Lorca, Eduardo, Lynch, Deena, Manera, Karine E., Marshall, John C., Gonzalez, Andrea Matus, McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Morris, Andrew Conway, Needham, Dale M., Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R., Simpson, A. John, Snelling, Tom, Strippoli, Giovanni F. M., Teixeira-Pinto, Armando, Torres, Antoni, Turner, Tari, Webb, Steve, Williamson, Paula R., Woc-Colburn, Laila, Zhang, Junhua, and Craig, Jonathan C.

Published
2021
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11. Core Outcomes Set for Trials in People With Coronavirus Disease 2019

Author

Tong, Allison, Elliott, Julian H., Azevedo, Luciano Cesar, Baumgart, Amanda, Bersten, Andrew, Cervantes, Lilia, Chew, Derek P., Cho, Yeoungjee, Cooper, Tess, Crowe, Sally, Douglas, Ivor S., Evangelidis, Nicole, Flemyng, Ella, Hannan, Elyssa, Horby, Peter, Howell, Martin, Lee, Jaehee, Liu, Emma, Lorca, Eduardo, Lynch, Deena, Marshall, John C., Matus Gonzalez, Andrea, McKenzie, Anne, Manera, Karine E., McLeod, Charlie, Mehta, Sangeeta, Mer, Mervyn, Conway Morris, Andrew, Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R., Snelling, Tom, Strippoli, Giovanni FM, Teixeira-Pinto, Armando, Torres, Antoni, Turner, Tari, Viecelli, Andrea K., Webb, Steve, Williamson, Paula R., Woc-Colburn, Laila, Zhang, Junhua, and Craig, Jonathan C.

Published
2020
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12. International Survey to Establish Prioritized Outcomes for Trials in People With Coronavirus Disease 2019

Author

Evangelidis, Nicole, Tong, Allison, Howell, Martin, Teixeira-Pinto, Armando, Elliott, Julian H., Azevedo, Luciano Cesar, Bersten, Andrew, Cervantes, Lilia, Chew, Derek P., Crowe, Sally, Douglas, Ivor S., Flemyng, Ella, Horby, Peter, Lee, Jaehee, Lorca, Eduardo, Lynch, Deena, Marshall, John C., McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Conway Morris, Andrew, Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R., Snelling, Tom, Strippoli, Giovanni F. M., Torres, Antoni, Turner, Tari, Webb, Steve, Williamson, Paula R., Woc-Colburn, Laila, Zhang, Junhua, Baumgart, Amanda, Cabrera, Sebastian, Cho, Yeoungjee, Cooper, Tess, Guha, Chandana, Liu, Emma, Gonzalez, Andrea Matus, McLeod, Charlie, Natale, Patrizia, Saglimbene, Valeria, Viecelli, Andrea K., and Craig, Jonathan C.

Published
2020
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14. Establishing Core Outcome Domains in Hemodialysis: Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop

Author

Collins, Allan, Narva, Andrew, Sautenet, Benedicte, Powell, Billy, Hurd, Brenda, Barrett, Brendan, Schiller, Brigitte, Culleton, Bruce, Hawley, Carmel, Pollock, Carol, Lok, Charmaine, Wanner, Christoph, Chan, Christopher, Weiner, Daniel, Harris, David, Johnson, David, Rosenbloom, David, Rifkin, Dena, Bookman, Deshia, Brown, Edwina, Bavlovlenkov, Elena, Tentori, Francesca, Williams, Jack, Schell, Jane, Flythe, Jennifer, Ix, Joachim, Raimann, Jochen, Andress, Joel, Agar, John, Daugirdas, John, Gill, John, Kusek, John, Polkinghorne, Kevan, Abbott, Kevin, Usyvat, Len, Krishnan, Mahesh, Tonelli, Marcello, Marshall, Mark, Gallagher, Martin, Germain, Michael, Walsh, Michael, Zappitelli, Michael, Josephson, Michelle, Burrows, Nilka Rios, Houston, Orlando, Kerr, Peter, Kotanko, Peter, Roy-Chaudhury, Prabir, Morton, Rachael, Mehrotra, Raj, Dorpel, Rene van den, Suri, Rita, Wald, Ron, Apata, Ronke, Gibson, Shalia, Evered, Sharrilyn, Fadem, Stephen, McDonald, Stephen, Holt, Steve, Kee, Terence, Manns, Braden, Hemmelgarn, Brenda, Wheeler, David, Harris, Tess, Winkelmayer, Wolfgang, Tong, Allison, O'Donoghue, Donal, Tam-Tham, Helen, Shen, Jenny, Pinter, Jule, Larkins, Nicholas, Evangelidis, Nicole, Van Den Dorpel, Rene, Parks, Reva, Youssouf, Sajeda, Mandayam, Sreedhar, Wheeler, David C., Tugwell, Peter, Crowe, Sally, Van Biesen, Wim, Winkelmayer, Wolfgang C., Shen, Jenny I., Ju, Angela, and Craig, Jonathan C.

Published
2017
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17. Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Author

Petkovic, Jennifer, Riddle, Alison, Akl, Elie A., Khabsa, Joanne, Lytvyn, Lyubov, Atwere, Pearl, Campbell, Pauline, Chalkidou, Kalipso, Chang, Stephanie M., Crowe, Sally, Dans, Leonila, Jardali, Fadi El, Ghersi, Davina, Graham, Ian D., Grant, Sean, Greer-Smith, Regina, Guise, Jeanne-Marie, Hazlewood, Glen, Jull, Janet, Katikireddi, S. Vittal, Langlois, Etienne V., Lyddiatt, Anne, Maxwell, Lara, Morley, Richard, Mustafa, Reem A., Nonino, Francesco, Pardo, Jordi Pardo, Pollock, Alex, Pottie, Kevin, Riva, John, Schünemann, Holger, Simeon, Rosiane, Smith, Maureen, Stein, Airton T., Synnot, Anneliese, Tufte, Janice, White, Howard, Welch, Vivian, Concannon, Thomas W., and Tugwell, Peter

Published
2020
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20. Research Priorities in CKD: Report of a National Workshop Conducted in Australia

Author

Tong, Allison, Crowe, Sally, Chando, Shingisai, Cass, Alan, Chadban, Steve J., Chapman, Jeremy R., Gallagher, Martin, Hawley, Carmel M., Hill, Sophie, Howard, Kirsten, Johnson, David W., Kerr, Peter G., McKenzie, Anne, Parker, David, Perkovic, Vlado, Polkinghorne, Kevan R., Pollock, Carol, Strippoli, Giovanni F.M., Tugwell, Peter, Walker, Rowan G., Webster, Angela C., Wong, Germaine, and Craig, Jonathan C.

Published
2015
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24. Establishing a Core Outcome Measure for Peritoneal Dialysis-related Peritonitis: A Standardized Outcomes in Nephrology—Peritoneal Dialysis Consensus Workshop Report

Author

SONG Executive Committee, Craig, Jonathan, Tong, Allison, Wang, Angela, Hemmelgarn, Brenda, Manns, Braden, Wheeler, David, Gill, John, Tugwell, Peter, Pecoits-Filho, Roberto, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang, SONG-PD Steering Group, Johnson, David W., Brown, Edwina, Brunier, Gillian, Perl, Jeffrey, Dong, Jie, Manera, Karine, Wilkie, Martin, Mehrotra, Rajnish, Dunning, Sue-Ann, Dunning, Tony, Cho, Yeoungjee, SONG-PD Infection Expert Working Group, Perl, Jeff, Piraino, Beth, Szeto, C.C., Forfang, Derek, Brown, Fiona, Ngaruiya, Grace, Htay, Htay, Teitelbaum, Isaac, Scholes-Robertson, Nicole, Gomez, Rafael, Nessim, Sharon, Kanjanabuch, Talerngsak, Ito, Yasuhiko, Shen, Jenny, Al Sahlawi, Muthana, SONG Coordinating Committee, Martin, Adam, Baumgart, Amanda, Bernier-Jean, Amelie, Matus Gonzalez, Andrea, Viecelli, Andrea, Ju, Angela, Teixera-Pinto, Armando, Sautenet, Benedicte, Hanson, Camilla, Guha, Chandana, Sumpton, Daniel, Hannan, Elyssa, O’Lone, Emma, Au, Eric, Kerklaan, Jasmijn, Dunn, Louese, Howell, Martin, Nataatmadja, Melissa, Evangelidis, Nicole, Amir, Noa, Natale, Patrizia, Cazzolli, Rosanna, Anumudu, Samaya, Carter, Simon, Gutman, Talia, Rahim Vastani, Thomas Vastani, Participants and contributors – Health professionals, Abu-Alfa, Ali, Matus-Gonzalez, Andrea, Aufricht, Christoph, Wallace, Eric, Dasgupta, Indranil, Knight, John, Foo, Marjorie, Lambie, Mark, Schreiber, Martin, Pisoni, Ronald, Apata, Ronke, Antwi, Sampson, Novosad, Shannon, Davies, Simon, Booth, Stephanie, Participants and contributors - Patients/family members/caregivers, Lau, Agnes, Chi, Allen, Heckendorn, Barbara, Allen, Brandie, Dewey, Brenda, Horton, Danielle, Edwards, Dawn, Robinson, Evelyn, Franco, Freddy, Braddock, Gary, Grossman, George, Chestney, Juliana, Laws, Karmen, Clark, Karrin, Penningtown, Keith, Richardson, Lisa, Verdin, Nancy, Jefferson, Nichole, Scholes-Robertson, Nicki, Gedney, Nieltje, Chestney, Norman, Griffiths, Pamela, Kidwell, Sharon, Downs, Shelley, Ball, Terence, Yaeger, Thomas, Elly, Virna, Senior, Wiliam, Shen, Jenny I., Manera, Karine E., Acevedo, Rafael G., Nessim, Sharon J., Szeto, Cheuk-Chun, Craig, Jonathan C., Gonzalez, Andrea M., and Viecelli, Andrea K.

Published
2022
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25. Perspectives of patients, family members, health professionals and the public on the impact of COVID-19 on mental health

Author

Gardiner, Evangeline, primary, Baumgart, Amanda, additional, Tong, Allison, additional, Elliott, Julian H., additional, Azevedo, Luciano Cesar, additional, Bersten, Andrew, additional, Cervantes, Lilia, additional, Chew, Derek P., additional, Cho, Yeoungjee, additional, Crowe, Sally, additional, Douglas, Ivor S., additional, Evangelidis, Nicole, additional, Flemyng, Ella, additional, Horby, Peter, additional, Howell, Martin, additional, Lee, Jaehee, additional, Lorca, Eduardo, additional, Lynch, Deena, additional, Marshall, John C., additional, Gonzalez, Andrea Matus, additional, McKenzie, Anne, additional, Manera, Karine, additional, Mehta, Sangeeta, additional, Mer, Mervyn, additional, Morris, Andrew Conway, additional, Nseir, Saad, additional, Povoa, Pedro, additional, Reid, Mark, additional, Sakr, Yasser, additional, Shen, Ning, additional, Smyth, Alan R., additional, Snelling, Tom, additional, Strippoli, Giovanni F. M, additional, Teixeira-Pinto, Armando, additional, Torres, Antoni, additional, Viecelli, Andrea K., additional, Webb, Steve, additional, Williamson, Paula R., additional, Woc-Colburn, Laila, additional, Zhang, Junhua, additional, and Craig, Jonathan C., additional

Published
2022
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28. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Guha, Abhjit, Solarin, Adaobi, Sinha, Aditi, Platona, Adriana, Hamilton, Alexander, Woods-Barnard, Alice, Neu, Alicia, Tong, Allison, Dart, Allison, Eddy, Allison, Karathanas, Alyssa, Baumgart, Amanda, Fielding, Amelia, LePage, Amelia, Bernier-Jean, Amelie, Kelly, Amy, Teixeira, Ana, Viecelli, Andrea, Matus, Andrea, Narva, Andrew, Ju, Angela, Wang, Angela Yee-Moon, Sharma, Ankit, Fielding, Anna, Francis, Anna, Meza, Anthony, Fielding, Aria, Teixeira-Pinto, Armando, Bagga, Arvind, Jankauskienė, Augustina, Kelly, Ayano, Gillespie, Barbara, Sautenet, Benedicte, Vogt, Beth, Foster, Bethany, Warady, Bradley, Dixon, Bradley, Manns, Braden, Hemmelgarn, Brenda, Bscardark, Brittney, Romeo, Brooklyn, Hanson, Camilla, Meza, Carlos, Brockett, Carter, Guha, Chandana, Prestidge, Chanel, Logeman, Charlotte, Green, Charmaine, Sanchez-Kazi, Cheryl, Perkins, Christy, Schmitt, Claus Peter, Fielding, Craig, Settee, Craig, Sumpton, Daniel, Meza, Daniel, Karathanas, Darien, Harris, David, Wheeler, David, Hooper, David, Gipson, Debbie, Geary, Denis, Bockenhauer, Detlef, Haffner, Dieter, Mekahli, Djalila, Drozdz, Dorota, Romeo, Ed, Ku, Elaine, Urbina, Elaine, Levtchenko, Elena, Balovlenkov, Elena, Hodson, Elisabeth, Morales, Emily, O'Lone, Emma, Machuca, Emma, Carlton, Emmah, Au, Eric, Olver, Erin, Morales, Estefania, Mirza, Fatima, Mackie, Fiona, Tentori, Francesca, Schaefer, Franz, Higgins, Gail, Deschenes, Georges, Plunkett, Georgia, Yoder, Gerilyn, Wong, Germaine, Morales, Giselle, Germino, Greg, Desmond, Hailey, Perkins, Hayley, Mitchell-Smith, Harrison, Coolican, Helen, Xu, Hong, Yap, Hui-Kim, Anochie, Ifeoma, Ha, Il-Soo, Davis, Ira, Liu, Isaac, Samaniego, Israel, Groothoff, Jaap, Machuca, Jaime, Machuca, James, Kerklaan, Jasmijn, Brockett, Jeff, Norton, Jenna, Shen, Jenny, Goebel, Jens, Rao, Jia, Machuca, Jimmy, Mitchell-Smith, Jo, Watson, Jo, Gill, John, Craig, Jonathan, Flynn, Joseph T., Kausman, Joshua, Samuels, Joshua, Bacchetta, Justine, Yoder, Kaleb, Manera, Karine, Azukaitis, Karolis, Twombley, Katherine, McMichael, Kelly-Ann, Ishikura, Kenji, Romeo, Kennedy, Settee, Kevin, Van, Kim Linh, McMichael, Lachlan, Trinh, Lany, Greenbaum, Larry, Sanchez, Laura, Fielding, Leo, Rees, Lesley, Lippincott, Leslie, Mejia-Saldivar, Levi, Saldivar, Lidia, Guay-Woodford, Lisa, Samaniego, Lizett, Hamiwka, Lorraine, Bell, Lorraine, Dunn, Louese, Barry, Lucinda, Macauley, Luke, Holmes, Luke, Karathanas, Madelynn, Mitchell-Smith, Madison, Walker, Mandy, Benavides, Manuel, Tonelli, Marcello, Ferris, Maria, Vivarelli, Marina, Wolfenden, Mark, Howell, Martin, Christian, Martin, Schreiber, Martin, Moxey-Mims, Marva, Leonard, Mary, Karathanas, Matthew, Pearl, Meghan, Natatmadja, Melissa, Brockett, Melissa, Bonilla-Felix, Melvin, Atkinson, Meredith, Zappitelli, Michael, Baum, Michel, Rheault, Michelle, McCulloch, Mignon, Matsuda-Abedini, Mina, Michael, Mini, Khan, Mohammad, Salih, Mohammad, Carlton, Mycah Ann, Benador, Nadine, Plunkett, Ngairre, Webb, Nick, Scholes-Robertson, Nicki, Larkins, Nicolas, Evangelidis, Nicole, Yoder, Nigel, Meza, Norma, Olver, Paige, Carlton, Paiyton, Brophy, Patrick, Tugwell, Peter, Cochat, Pierre, Mehrotra, Rajnish, Wolfenden, Raphael, Gbadegesin, Rasheed, Benavides, Raymond, Johnson, Rebecca, Morales, Ricardo, Jr., McGee, Richard, Fish, Richard, Gardos, Robert, Pecoits-Filho, Roberto, Vargas, Rocio, Saldivar, Rodolfo, Coppo, Rosanna, Shroff, Rukshana, Raina, Rupesh, Youssouf, Sajeda, Crowe, Sally, Anumudu, Samaya, Chan, Samuel, Baldacchino, Sarah, Wenderfer, Scott, Wolfenden, Sebastian, Carlton, Selah, Sutton, Shanna, Murphy, Shannon, Teo, Sharon, Salih, Sheyma, Sahney, Shobha, Carlton, Silas, Carter, Simon, Pearson, Simone, Khan, Simra, Wilson, Skyla, Sharma, Sonia, Alexander, Stephen, Marks, Stephen, Cornish, Stephen, Goldstein, Stuart, Samuel, Susan, Furth, Susan, Mendley, Susan, Lippincott, Susan, Charles, Symone, Gutman, Talia, Mitchell-Smith, Terri, Harris, Tess, Vetter, Thorsten, Carlton, Tiffany, Carlton, Timothy, Querfeld, Uwe, Saglimbene, Valeria, Charles, Virginia, van Biesen, Wim, Winkelmayer, Wolfgang, Machuca, Yenissey, Cho, Yeoungjee, Salih, Yusuf, Anh, Yo Han, Perkins, Zachary, Salih, Zeynab, Hanson, Camilla S., Craig, Jonathan C., Eddy, Allison A., Gipson, Debbie S., Webb, Nicholas J.A., Alexander, Stephen I., Furth, Susan L., Viecelli, Andrea K., Au, Eric H., Shen, Jenny I., Manera, Karine E., Carter, Simon A., and Walker, Amanda

Published
2020
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31. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery

Author

Tong, Allison, Baumgart, Amanda, Evangelidis, Nicole, Viecelli, Andrea K, Carter, Simon A, Azevedo, Luciano Cesar, Cooper, Tess, Bersten, Andrew, Cervantes, Lilia, Chew, Derek P, Crowe, Sally, Douglas, Ivor S, Flemyng, Ella, Elliott, Julian H, Hannan, Elyssa, Horby, Peter, Howell, Martin, Ju, Angela, Lee, Jaehee, Lorca, Eduardo, Lynch, Deena, Manera, Karine E, Marshall, John C, Gonzalez, Andrea Matus, McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Morris, Andrew Conway, Needham, Dale M, Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R, Simpson, A John, Snelling, Tom, Strippoli, Giovanni FM, Teixeira-Pinto, Armando, Torres, Antoni, Turner, Tari, Webb, Steve, Williamson, Paula R, Woc-Colburn, Laila, Zhang, Junhua, Craig, Jonathan C, COVID-19-Core Outcomes Set Investigators, Teixeira-Pinto, Armando [0000-0002-9389-2516], and Apollo - University of Cambridge Repository

Subjects
Clinical Trials as Topic, Dyspnea, Research Design, Multiple Organ Failure, Outcome Assessment, Health Care, Practice Guidelines as Topic, COVID-19, Humans, Reproducibility of Results, Recovery of Function, Respiratory Insufficiency
Abstract

OBJECTIVES: Respiratory failure, multiple organ failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals, and the public from 111 countries in the global coronavirus disease 2019 core outcome set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in coronavirus disease 2019. DESIGN: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiple organ failure, shortness of breath, and recovery. SETTING: International. PATIENTS: About 130 participants (patients, public, and health professionals) from 17 countries attended the three workshops. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Respiratory failure, assessed by the need for respiratory support based on the World Health Organization Clinical Progression Scale, was considered pragmatic, objective, and with broad applicability to various clinical scenarios. The Sequential Organ Failure Assessment was recommended for multiple organ failure, because it was routinely used in trials and clinical care, well validated, and feasible. The Modified Medical Research Council measure for shortness of breath, with minor adaptations (recall period of 24 hr to capture daily fluctuations and inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with coronavirus disease 2019), was regarded as fit for purpose for this indication. The recovery measure was developed de novo and defined as the absence of symptoms, resumption of usual daily activities, and return to the previous state of health prior to the illness, using a 5-point Likert scale, and was endorsed. CONCLUSIONS: The coronavirus disease 2019 core outcome set recommended core outcome measures have content validity and are considered the most feasible and acceptable among existing measures. Implementation of the core outcome measures in trials in coronavirus disease 2019 will ensure consistency and relevance of the evidence to inform decision-making and care of patients with coronavirus disease 2019.

Published
2020
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32. Additional file 4 of Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Author

Petkovic, Jennifer, Riddle, Alison, Akl, Elie, Khabsa, Joanne, Lytvyn, Lyubov, Atwere, Pearl, Campbell, Pauline, Kalipso Chalkidou, Chang, Stephanie, Crowe, Sally, Dans, Leonila, Jardali, Fadi, Ghersi, Davina, Graham, Ian, Grant, Sean, Greer-Smith, Regina, Jeanne-Marie Guise, Hazlewood, Glen, Jull, Janet, S. Katikireddi, Langlois, Etienne, Lyddiatt, Anne, Maxwell, Lara, Morley, Richard, Mustafa, Reem, Nonino, Francesco, Pardo, Jordi, Pollock, Alex, Pottie, Kevin, Riva, John, Schünemann, Holger, Simeon, Rosiane, Smith, Maureen, Airton Stein, Synnot, Anneliese, Tufte, Janice, White, Howard, Welch, Vivian, Concannon, Thomas, and Tugwell, Peter

Abstract

Additional file 4. Stakeholders across the 18 steps.

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2020
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33. Additional file 3 of Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Author

Petkovic, Jennifer, Riddle, Alison, Akl, Elie, Khabsa, Joanne, Lytvyn, Lyubov, Atwere, Pearl, Campbell, Pauline, Kalipso Chalkidou, Chang, Stephanie, Crowe, Sally, Dans, Leonila, Jardali, Fadi, Ghersi, Davina, Graham, Ian, Grant, Sean, Greer-Smith, Regina, Jeanne-Marie Guise, Hazlewood, Glen, Jull, Janet, S. Katikireddi, Langlois, Etienne, Lyddiatt, Anne, Maxwell, Lara, Morley, Richard, Mustafa, Reem, Nonino, Francesco, Pardo, Jordi, Pollock, Alex, Pottie, Kevin, Riva, John, Schünemann, Holger, Simeon, Rosiane, Smith, Maureen, Airton Stein, Synnot, Anneliese, Tufte, Janice, White, Howard, Welch, Vivian, Concannon, Thomas, and Tugwell, Peter

Abstract

Additional file 3. PRISMA-P reporting checklist.

Published
2020
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35. Additional file 2 of Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Author

Petkovic, Jennifer, Riddle, Alison, Akl, Elie, Khabsa, Joanne, Lytvyn, Lyubov, Atwere, Pearl, Campbell, Pauline, Kalipso Chalkidou, Chang, Stephanie, Crowe, Sally, Dans, Leonila, Jardali, Fadi, Ghersi, Davina, Graham, Ian, Grant, Sean, Greer-Smith, Regina, Jeanne-Marie Guise, Hazlewood, Glen, Jull, Janet, S. Katikireddi, Langlois, Etienne, Lyddiatt, Anne, Maxwell, Lara, Morley, Richard, Mustafa, Reem, Nonino, Francesco, Pardo, Jordi, Pollock, Alex, Pottie, Kevin, Riva, John, Schünemann, Holger, Simeon, Rosiane, Smith, Maureen, Airton Stein, Synnot, Anneliese, Tufte, Janice, White, Howard, Welch, Vivian, Concannon, Thomas, and Tugwell, Peter

Subjects
MathematicsofComputing_GENERAL, Data_FILES, TheoryofComputation_GENERAL
Abstract

Additional file 2. The MuSE Consortium.

Published
2020
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36. Additional file 1 of Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Author

Petkovic, Jennifer, Riddle, Alison, Akl, Elie, Khabsa, Joanne, Lytvyn, Lyubov, Atwere, Pearl, Campbell, Pauline, Kalipso Chalkidou, Chang, Stephanie, Crowe, Sally, Dans, Leonila, Jardali, Fadi, Ghersi, Davina, Graham, Ian, Grant, Sean, Greer-Smith, Regina, Jeanne-Marie Guise, Hazlewood, Glen, Jull, Janet, S. Katikireddi, Langlois, Etienne, Lyddiatt, Anne, Maxwell, Lara, Morley, Richard, Mustafa, Reem, Nonino, Francesco, Pardo, Jordi, Pollock, Alex, Pottie, Kevin, Riva, John, Schünemann, Holger, Simeon, Rosiane, Smith, Maureen, Airton Stein, Synnot, Anneliese, Tufte, Janice, White, Howard, Welch, Vivian, Concannon, Thomas, and Tugwell, Peter

Subjects
Data_FILES
Abstract

Additional file 1: Table S1. Levels of engagement.

Published
2020
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39. Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology–Polycystic Kidney Disease (SONG-PKD) Consensus Workshop

Author

Cho, Yeoungjee, primary, Tong, Allison, additional, Craig, Jonathan C., additional, Mustafa, Reem A., additional, Chapman, Arlene, additional, Perrone, Ronald D., additional, Ahn, Curie, additional, Fowler, Kevin, additional, Torres, Vicente, additional, Gansevoort, Ron T., additional, Ong, Albert C.M., additional, Coolican, Helen, additional, Tze-Wah Kao, Juliana, additional, Harris, Tess, additional, Gutman, Talia, additional, Shen, Jenny I., additional, Viecelli, Andrea K., additional, Johnson, David W., additional, Au, Eric, additional, El-Damanawi, Ragada, additional, Logeman, Charlotte, additional, Ju, Angela, additional, Manera, Karine E., additional, Chonchol, Michel, additional, Odland, Dwight, additional, Baron, David, additional, Pei, York, additional, Sautenet, Benedicte, additional, Rastogi, Anjay, additional, Sharma, Ankit, additional, Rangan, Gopala, additional, Levin, Adeera, additional, Yu, Alan, additional, Ong, Albert, additional, Thompson, Aliza, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Viecelli, Andrea, additional, Mallett, Andrew, additional, Wang, Angela, additional, Rastog, Anjay, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Canaud, Bernard, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Hanson, Camilla, additional, Hawley, Carmel, additional, Pollock, Carol, additional, Chao, Chia-Ter, additional, Rutherford, Claudia, additional, Sumpton, Daniel, additional, Harris, David, additional, Johnson, David, additional, Wheeler, David, additional, Mekahli, Djalila, additional, O’Donoghue, Donal, additional, Peters, Dorien, additional, Oberdhan, Dorothee, additional, Balovlenkov, Elena, additional, O'Lone, Emma, additional, Tentori, Francesca, additional, Czerwiec, Frank, additional, Oskoui, Frederic Rahbari, additional, Rangan, Gopi, additional, Germino, Gregory, additional, Park, Hayne, additional, Htay, Htay, additional, Ryu, Hyunjin, additional, Norton, Jenna, additional, Shen, Jenny, additional, Gill, John, additional, Kao, Juliana, additional, Eckardt, Kai-Uwe, additional, Manera, Karine, additional, Van, Kim Linh, additional, Guay-Woodford, Lisa, additional, Krishnan, Mahesh, additional, Hogan, Marie, additional, Howell, Martin, additional, Park, Meyeon, additional, Mrug, Michal, additional, Ta, Michelle, additional, Evangelidis, Nicole, additional, Harris, Peter, additional, Tugwell, Peter, additional, Garimella, Pranav, additional, Krishnasamy, Rathika, additional, Mustafa, Reem, additional, McGee, Richard, additional, Pecoits-Filho, Roberto, additional, Gansevoort, Ron, additional, Perrone, Ronald, additional, Torra, Roser, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Bernays, Sarah, additional, Horie, Shigeo, additional, Carter, Simon, additional, Palmer, Suetonia, additional, Mendley, Susan, additional, Watnick, Terry, additional, Hiemstra, Thomas, additional, Weimbs, Thomas, additional, Jha, Vivek, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Cho, Yeoungjee, additional, Oh, Yun Kyu, additional, Clark, David, additional, McGinty-Poteet, Debra, additional, King, Elizabeth, additional, Vickers, Frances, additional, Odland, Jean, additional, Lee, Lynore, additional, Vickers, Marvin, additional, Johnston-Clark, Mary, additional, Dorsey, Robin, additional, and Baron, Zachary, additional

Published
2021
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41. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Hanson, Camilla S., primary, Craig, Jonathan C., additional, Logeman, Charlotte, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A., additional, Guha, Chandana, additional, Gipson, Debbie S., additional, Bockenhauer, Detlef, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Webb, Nicholas J.A., additional, Alexander, Stephen I., additional, Furth, Susan L., additional, Samuel, Susan, additional, Neu, Alicia, additional, Viecelli, Andrea K., additional, Ju, Angela, additional, Sharma, Ankit, additional, Au, Eric H., additional, Desmond, Hailey, additional, Shen, Jenny I., additional, Manera, Karine E., additional, Azukaitis, Karolis, additional, Dunn, Louese, additional, Carter, Simon A., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Walker, Amanda, additional, Francis, Anna, additional, Sanchez-Kazi, Cheryl, additional, Kausman, Joshua, additional, Pearl, Meghan, additional, Benador, Nadine, additional, Sahney, Shobha, additional, Tong, Allison, additional, Guha, Abhjit, additional, Solarin, Adaobi, additional, Platona, Adriana, additional, Hamilton, Alexander, additional, Woods-Barnard, Alice, additional, Eddy, Allison, additional, Karathanas, Alyssa, additional, Baumgart, Amanda, additional, Fielding, Amelia, additional, LePage, Amelia, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Teixeira, Ana, additional, Viecelli, Andrea, additional, Matus, Andrea, additional, Narva, Andrew, additional, Wang, Angela Yee-Moon, additional, Fielding, Anna, additional, Meza, Anthony, additional, Fielding, Aria, additional, Teixeira-Pinto, Armando, additional, Bagga, Arvind, additional, Jankauskienė, Augustina, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Sautenet, Benedicte, additional, Vogt, Beth, additional, Foster, Bethany, additional, Warady, Bradley, additional, Dixon, Bradley, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Bscardark, Brittney, additional, Romeo, Brooklyn, additional, Hanson, Camilla, additional, Meza, Carlos, additional, Brockett, Carter, additional, Prestidge, Chanel, additional, Green, Charmaine, additional, Perkins, Christy, additional, Schmitt, Claus Peter, additional, Fielding, Craig, additional, Settee, Craig, additional, Sumpton, Daniel, additional, Meza, Daniel, additional, Karathanas, Darien, additional, Harris, David, additional, Wheeler, David, additional, Hooper, David, additional, Gipson, Debbie, additional, Geary, Denis, additional, Haffner, Dieter, additional, Mekahli, Djalila, additional, Drozdz, Dorota, additional, Romeo, Ed, additional, Ku, Elaine, additional, Urbina, Elaine, additional, Levtchenko, Elena, additional, Balovlenkov, Elena, additional, Hodson, Elisabeth, additional, Morales, Emily, additional, O'Lone, Emma, additional, Machuca, Emma, additional, Carlton, Emmah, additional, Au, Eric, additional, Olver, Erin, additional, Morales, Estefania, additional, Mirza, Fatima, additional, Mackie, Fiona, additional, Tentori, Francesca, additional, Schaefer, Franz, additional, Higgins, Gail, additional, Deschenes, Georges, additional, Plunkett, Georgia, additional, Yoder, Gerilyn, additional, Wong, Germaine, additional, Morales, Giselle, additional, Germino, Greg, additional, Perkins, Hayley, additional, Mitchell-Smith, Harrison, additional, Coolican, Helen, additional, Xu, Hong, additional, Anochie, Ifeoma, additional, Ha, Il-Soo, additional, Davis, Ira, additional, Liu, Isaac, additional, Samaniego, Israel, additional, Machuca, Jaime, additional, Machuca, James, additional, Kerklaan, Jasmijn, additional, Brockett, Jeff, additional, Norton, Jenna, additional, Shen, Jenny, additional, Goebel, Jens, additional, Rao, Jia, additional, Machuca, Jimmy, additional, Mitchell-Smith, Jo, additional, Watson, Jo, additional, Gill, John, additional, Craig, Jonathan, additional, Flynn, Joseph T., additional, Samuels, Joshua, additional, Bacchetta, Justine, additional, Yoder, Kaleb, additional, Manera, Karine, additional, Twombley, Katherine, additional, McMichael, Kelly-Ann, additional, Ishikura, Kenji, additional, Romeo, Kennedy, additional, Settee, Kevin, additional, Van, Kim Linh, additional, McMichael, Lachlan, additional, Trinh, Lany, additional, Greenbaum, Larry, additional, Sanchez, Laura, additional, Fielding, Leo, additional, Rees, Lesley, additional, Lippincott, Leslie, additional, Mejia-Saldivar, Levi, additional, Saldivar, Lidia, additional, Guay-Woodford, Lisa, additional, Samaniego, Lizett, additional, Hamiwka, Lorraine, additional, Bell, Lorraine, additional, Barry, Lucinda, additional, Macauley, Luke, additional, Holmes, Luke, additional, Karathanas, Madelynn, additional, Mitchell-Smith, Madison, additional, Walker, Mandy, additional, Benavides, Manuel, additional, Tonelli, Marcello, additional, Ferris, Maria, additional, Vivarelli, Marina, additional, Wolfenden, Mark, additional, Howell, Martin, additional, Christian, Martin, additional, Schreiber, Martin, additional, Moxey-Mims, Marva, additional, Leonard, Mary, additional, Karathanas, Matthew, additional, Natatmadja, Melissa, additional, Brockett, Melissa, additional, Bonilla-Felix, Melvin, additional, Atkinson, Meredith, additional, Baum, Michel, additional, Rheault, Michelle, additional, McCulloch, Mignon, additional, Matsuda-Abedini, Mina, additional, Michael, Mini, additional, Khan, Mohammad, additional, Salih, Mohammad, additional, Carlton, Mycah Ann, additional, Plunkett, Ngairre, additional, Webb, Nick, additional, Scholes-Robertson, Nicki, additional, Larkins, Nicolas, additional, Evangelidis, Nicole, additional, Yoder, Nigel, additional, Meza, Norma, additional, Olver, Paige, additional, Carlton, Paiyton, additional, Brophy, Patrick, additional, Tugwell, Peter, additional, Cochat, Pierre, additional, Mehrotra, Rajnish, additional, Wolfenden, Raphael, additional, Gbadegesin, Rasheed, additional, Benavides, Raymond, additional, Johnson, Rebecca, additional, Morales, Ricardo, additional, McGee, Richard, additional, Fish, Richard, additional, Gardos, Robert, additional, Pecoits-Filho, Roberto, additional, Vargas, Rocio, additional, Saldivar, Rodolfo, additional, Coppo, Rosanna, additional, Shroff, Rukshana, additional, Raina, Rupesh, additional, Youssouf, Sajeda, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Baldacchino, Sarah, additional, Wenderfer, Scott, additional, Wolfenden, Sebastian, additional, Carlton, Selah, additional, Sutton, Shanna, additional, Murphy, Shannon, additional, Teo, Sharon, additional, Salih, Sheyma, additional, Carlton, Silas, additional, Carter, Simon, additional, Pearson, Simone, additional, Khan, Simra, additional, Wilson, Skyla, additional, Sharma, Sonia, additional, Alexander, Stephen, additional, Marks, Stephen, additional, Cornish, Stephen, additional, Goldstein, Stuart, additional, Furth, Susan, additional, Mendley, Susan, additional, Lippincott, Susan, additional, Charles, Symone, additional, Mitchell-Smith, Terri, additional, Harris, Tess, additional, Vetter, Thorsten, additional, Carlton, Tiffany, additional, Carlton, Timothy, additional, Querfeld, Uwe, additional, Saglimbene, Valeria, additional, Charles, Virginia, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Machuca, Yenissey, additional, Salih, Yusuf, additional, Anh, Yo Han, additional, Perkins, Zachary, additional, and Salih, Zeynab, additional

Published
2020
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42. Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals

Author

Natale, Patrizia, primary, Gutman, Talia, additional, Howell, Martin, additional, Dansie, Kathryn, additional, Hawley, Carmel M, additional, Cho, Yeoungjee, additional, Viecelli, Andrea K, additional, Craig, Jonathan C, additional, Jesudason, Shilpanjali, additional, Chapman, Jeremy R, additional, Johnson, David W, additional, Murphy, Lisa, additional, Reidlinger, Donna, additional, Crowe, Sally, additional, Duncanson, Emily, additional, Muthuramalingam, Shyamsundar, additional, Scholes-Robertson, Nicole, additional, Williamson, Amber, additional, McDonald, Stephen, additional, Wong, Germaine, additional, Teixeira-Pinto, Armando, additional, Strippoli, Giovanni F M, additional, and Tong, Allison, additional

Published
2020
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43. Establishing a Core Outcome Set for Peritoneal Dialysis: Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop

Author

Manera, Karine E., primary, Johnson, David W., additional, Craig, Jonathan C., additional, Shen, Jenny I., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Wang, Angela Yee-Moon, additional, Brown, Edwina A., additional, Brunier, Gillian, additional, Dong, Jie, additional, Dunning, Tony, additional, Mehrotra, Rajnish, additional, Naicker, Saraladevi, additional, Pecoits-Filho, Roberto, additional, Perl, Jeffrey, additional, Wilkie, Martin, additional, Tong, Allison, additional, Levin, Adeera, additional, Liew, Adrian, additional, Cueto Manzano, Alfonso, additional, Abu Alfa, Ali, additional, Neu, Alicia, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Figueiredo, Ana, additional, Matus, Andrea, additional, Viecelli, Andrea, additional, Ju, Angela, additional, Saxena, Anjali, additional, Sharma, Ankit, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Mendelson, Asher, additional, Kelly, Ayano, additional, Goh, Bak Leong, additional, Sautenet, Benedicte, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Robinson, Bruce, additional, Hanson, Camilla, additional, Cheung, Catherine, additional, Guha, Chandana, additional, Logeman, Charlotte, additional, Szeto, Cheuk-Chun, additional, Rutherford, Claudia, additional, Schwartz, Daniel, additional, Sumpton, Daniel, additional, Johnson, David, additional, Wheeler, David, additional, Brown, Edwina, additional, O’Lone, Emma, additional, Au, Eric, additional, Goffin, Eric, additional, Finkelstein, Fred, additional, Abraham, Georgi, additional, Germino, Greg, additional, Hurst, Helen, additional, Kawanishi, Hideki, additional, Htay, Htay, additional, Yap, Hui Kim, additional, Teitelbaum, Isaac, additional, Chen, Jenny, additional, Shen, Jenny, additional, Neumann, Joanna, additional, Bargman, Joanne, additional, Morelle, Johann, additional, Craig, Jonathan, additional, Kilonzo, Kajiru Gad, additional, Yeates, Karen, additional, Manera, Karine, additional, Azukaitis, Karolis, additional, Van, Kim Linh, additional, Dunn, Louese, additional, Krishnan, Mahesh, additional, Lambie, Mark, additional, Howell, Martin, additional, Schreiber, Martin, additional, Oliver, Matthew, additional, Sanabria, Mauricio Rafael, additional, Nataatmadja, Melissa, additional, Lichodziejewska-Niemierko, Monika, additional, Verdin, Nancy, additional, Mann, Neelam, additional, Boudville, Neil, additional, Evangelidis, Nicole, additional, Scholes-Robertson, Nicole, additional, Blake, Peter, additional, Nourse, Peter, additional, Tugwell, Peter, additional, Li, Philip Kam-Tao, additional, McGee, Richard, additional, Quinn, Robert, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Bernays, Sarah, additional, Naicker, Sarala, additional, Wilson, Scott, additional, Nessim, Sharon, additional, Teo, Sharon, additional, Carter, Simon A., additional, Davies, Simon, additional, Sweety, Soheli Ahmed, additional, Toffelmire, Ted, additional, Jassal, Vanita, additional, Jha, Vivekanand, additional, da Silva, Viviane Calice, additional, Van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Ito, Yasuhiko, additional, Kim, Yong-Lim, additional, and Butt, Zeeshan, additional

Published
2020
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45. Reporting guideline for priority setting of health research (REPRISE)

Author

Tong, Allison, primary, Synnot, Anneliese, additional, Crowe, Sally, additional, Hill, Sophie, additional, Matus, Andrea, additional, Scholes-Robertson, Nicole, additional, Oliver, Sandy, additional, Cowan, Katherine, additional, Nasser, Mona, additional, Bhaumik, Soumyadeep, additional, Gutman, Talia, additional, Baumgart, Amanda, additional, and Craig, Jonathan C, additional

Published
2019
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47. Topic refinement for Cochrane Reviews- working with partners to reach stakeholders

Author

Hill, RA and Crowe, Sally

Abstract

Topic refinement for Cochrane Reviews – working with partners to reach stakeholders: a case study Background This presentation describes a case study in Epilepsy and Movement Disorders review topic refinement - a process combining prioritisation of topics and the outcomes used to explore those topics. Agreeing topics for and relative importance of systematic reviews is an important part of the review production cycle. Difficult decisions sometimes need to be made as capacity in limited and there will competing ideas for reviews. Stakeholder engagement in topic refinement is just one aspect of the review process that needs careful thought and planning, not only in terms of methods, but also consideration of scope of the refinement and resources to be applied We will describe how we conducted stakeholder engagement that helped to refine, select and understand the importance of a selection of systematic reviews in epilepsy and Parkinson’s Disease. This topic refinement was part of a programme of work funded by NIHR (16/114/26). What we did When we refer to stakeholders in this project, we mean people with direct experience of the health conditions, such as people with epilepsy or Parkinson’s Disease, carers and health professionals. We engaged with stakeholders to seek their preferences for Cochrane systematic review topics relating to interventions and care for people with Epilepsy or Parkinson’s Disease. We used a shortlist of review topics developed by the review group editorial base in consultation with clinical experts. There were 26 shortlisted topics on epilepsy and 11 for Parkinson’s Disease. We used 2 separate web-based questionnaires for the topic refinement. People were asked to choose their top 5 review topics from the shortlists, rank these in order of priority and, finally, to comment on the reasons for their choices using free text boxes. A distinct feature of our approach was that the same questionnaire also invited people to suggest additional topics, rank these and share reasons for their suggestions. How we did it We carefully considered our approach to topic refinement, referring to approaches described by Cochrane Priority Setting Methods Group, James Lind Alliance (JLA), NICE and the REPRISE checklist and available digital technologies. We also developed partnerships with 2 key stakeholder groups representing people with Epilepsy or Parkinson’s Disease (Epilepsy Action, Parkinson’s UK). As a team, we agreed to focus our approach on the use of web-based questionnaires, promoted by our 2 partner groups and targeted social media activity. We focussed primarily on people living with either epilepsy or Parkinson’s, carers and family members, but health and social care professionals could also complete the survey. We used email from our stakeholder partners to their membership and social media to publicise the surveys and encourage participation. We also used a variety of visual media to catch people’s attention and direct them to the surveys. We ensured that the survey had links to infographics and materials (Cochrane and others) that explained the context for the survey was to informed priorities for Cochrane Systematic Reviews. Ethical approval was obtained from the University of Liverpool (Health and Life Sciences Research Ethics Committee 3087). What has been the output/impact? Overall response rates were excellent, and comparable numbers achieved for established organisations focusing on priorities (such as JLA). For the Epilepsy survey there were 569 survey participants and for the Parkinson’s survey, 470 people took part. For epilepsy ,336 people answered the question ‘Tell us more about why these topics are a priority for more research using a systematic review’. Responses ranged from descriptions of adverse effects of treatments, comments on the balance of control of conditions and adverse effects and uncertainties on effectiveness in particular groups. In the Parkinson’s survey, 272 people responded yielding a similarly rich source of data about choices. These are being analysed. What can others learn? • Options available to conduct topic refinement (prioritisation) at a good quality and scale within limited resources. • Practical advice on how to conduct successful online engagement for priority setting reviews, from a case study with people with Epilepsy or Parkinson’s Disease and their carers and family members. • Ways this exercise is contributing to Review Group discussions about topic choices and key areas to explore within their reviews.

Published
2019

49. MOESM1 of Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals

Author

Oliver, Sandy, Seilin Uhm, Duley, Lelia, Crowe, Sally, David, Anna, James, Catherine, Chivers, Zoe, Gyte, Gill, Gale, Chris, Turner, Mark, Chambers, Bev, Dowling, Irene, McNeill, Jenny, Alderdice, Fiona, Shennan, Andrew, and Deshpande, Sanjeev

Abstract

Additional file 1. Survey form.

Published
2019
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50. Research priorities for childhood chronic conditions: A workshop report

Author

Lopez-Vargas, Pamela, Tong, Allison, Crowe, Sally, Alexander, Stephen I., Caldwell, Patrina Ha Yuen, Campbell, Dianne E., Couper, Jennifer, Davidson, Andrew, De, Sukanya, Fitzgerald, Dominic A., Haddad, Suzy, Hill, Sophie, Howell, Martin, Jaffe, Adam, James, Laura J., Ju, Angela, Manera, Karine E., McKenzie, Anne, Morrow, Angie M., Odgers, Harrison Lindsay, Pinkerton, Ross, Ralph, Angelique F., Richmond, Peter, Shaw, Peter J., Singh-Grewal, Davinder, Van Zwieten, Anita, Wake, Melissa, Craig, Jonathan C., other, and, Bowers, Alison, Lopez-Vargas, Pamela, Tong, Allison, Crowe, Sally, Alexander, Stephen I., Caldwell, Patrina Ha Yuen, Campbell, Dianne E., Couper, Jennifer, Davidson, Andrew, De, Sukanya, Fitzgerald, Dominic A., Haddad, Suzy, Hill, Sophie, Howell, Martin, Jaffe, Adam, James, Laura J., Ju, Angela, Manera, Karine E., McKenzie, Anne, Morrow, Angie M., Odgers, Harrison Lindsay, Pinkerton, Ross, Ralph, Angelique F., Richmond, Peter, Shaw, Peter J., Singh-Grewal, Davinder, Van Zwieten, Anita, Wake, Melissa, Craig, Jonathan C., other, and, and Bowers, Alison

Abstract

Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy. Objective: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. Setting: An Australian paediatric hospital and health consumer organisations. Methods: Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed. Results: Seventy-eight research questions were identified. Five themes underpinned participants' priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary

Published
2019

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