11 results on '"Ebony Madden"'
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2. Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
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Paulina Tindana, Aminu Yakubu, Ciara Staunton, Alice Matimba, Katherine Littler, Ebony Madden, Nchangwi Syntia Munung, Jantina de Vries, and as members of the H3Africa Consortium
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Medical philosophy. Medical ethics ,R723-726 - Abstract
Abstract In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.
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- 2019
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3. Proceedings from the 9th annual conference on the science of dissemination and implementation
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David Chambers, Lisa Simpson, Gila Neta, Ulrica von Thiele Schwarz, Antoinette Percy-Laurry, Gregory A. Aarons, Ross Brownson, Amanda Vogel, Shannon Wiltsey Stirman, Kenneth Sherr, Rachel Sturke, Wynne E. Norton, Allyson Varley, Cynthia Vinson, Lisa Klesges, Suzanne Heurtin-Roberts, M. Rashad Massoud, Leighann Kimble, Arne Beck, Claire Neely, Jennifer Boggs, Carmel Nichols, Wen Wan, Erin Staab, Neda Laiteerapong, Nathalie Moise, Ravi Shah, Susan Essock, Margaret Handley, Amy Jones, Jay Carruthers, Karina Davidson, Lauren Peccoralo, Lloyd Sederer, Todd Molfenter, Ashley Scudder, Sarah Taber-Thomas, Kristen Schaffner, Amy Herschell, Eva Woodward, Jeffery Pitcock, Mona Ritchie, JoAnn Kirchner, Julia E. Moore, Sobia Khan, Shusmita Rashid, Jamie Park, Melissa Courvoisier, Sharon Straus, Daniel Blonigen, Allison Rodriguez, Luisa Manfredi, Andrea Nevedal, Joel Rosenthal, David Smelson, Christine Timko, Nicole Stadnick, Jennifer Regan, Miya Barnett, Anna Lau, Lauren Brookman-Frazee, Erick Guerrero, Karissa Fenwick, Yinfei Kong, Gregory Aarons, Rebecca Lengnick-Hall, Benjamin Henwood, Nina Sayer, Craig Rosen, Robert Orazem, Brandy Smith, Lindsey Zimmerman, David Lounsbury, Rachel Kimerling, Jodie A. Trafton, Steven Lindley, Rahul Bhargava, Hal Roberts, Laura Gibson, Gabriel J. Escobar, Vincent Liu, Benjamin Turk, Arona Ragins, Patricia Kipnis, Ashley Ketterer Gruszkowski, Michael W. Kennedy, Emily Rentschler Drobek, Lior Turgeman, Aleksandra Sasha Milicevic, Terrence L. Hubert, Larissa Myaskovsky, Youxu C. Tjader, Robert J. Monte, Kathryn G. Sapnas, Edmond Ramly, Diane R Lauver, Christie M Bartels, Shereef Elnahal, Andrea Ippolito, Hillary Peabody, Carolyn Clancy, Randall Cebul, Thomas Love, Douglas Einstadter, Shari Bolen, Brook Watts, Vera Yakovchenko, Angela Park, William Lukesh, Donald R. Miller, David Thornton, Mari-Lynn Drainoni, Allen L. Gifford, Shawna Smith, Julia Kyle, Mark S Bauer, Daniel Eisenberg, Celeste Liebrecht, Michelle Barbaresso, Amy Kilbourne, Elyse Park, Giselle Perez, Jamie Ostroff, Sarah Greene, Michael Parchman, Brian Austin, Eric Larson, Stefanie Ferreri, Chris Shea, Megan Smith, Kea Turner, Jennifer Bacci, Kyle Bigham, Geoffrey Curran, Caity Frail, Cory Hamata, Terry Jankowski, Wendy Lantaff, Melissa Somma McGivney, Margie Snyder, Megan McCullough, Chris Gillespie, Beth Ann Petrakis, Ellen Jones, Carol VanDeusen Lukas, Adam Rose, Sarah J. Shoemaker, Jeremy Thomas, Benjamin Teeter, Holly Swan, Appathurai Balamurugan, Meghan Lane-Fall, Rinad Beidas, Laura Di Taranti, Sruthi Buddai, Enrique Torres Hernandez, Jerome Watts, Lee Fleisher, Frances Barg, Isomi Miake-Lye, Tanya Olmos, Emmeline Chuang, Hector Rodriguez, Gerald Kominski, Becky Yano, Stephen Shortell, Mary Hook, Linda Fleisher, Alexander Fiks, Katie Halkyard, Rachel Gruver, Emily Sykes, Kimberly Vesco, Kate Beadle, Joanna Bulkley, Ashley Stoneburner, Michael Leo, Amanda Clark, Joan Smith, Christopher Smyser, Maggie Wolf, Shamik Trivedi, Brian Hackett, Rakesh Rao, F. Sessions Cole, Rose McGonigle, Ann Donze, Enola Proctor, Amit Mathur, Emmanuela Gakidou, Stephen Gloyd, Carolyn Audet, Jose Salato, Sten Vermund, Rivet Amico, Stephanie Smith, Beatha Nyirandagijimana, Hildegarde Mukasakindi, Christian Rusangwa, Molly Franke, Giuseppe Raviola, Matthew Cummings, Elijah Goldberg, Savio Mwaka, Olive Kabajaasi, Adithya Cattamanchi, Achilles Katamba, Shevin Jacob, Nathan Kenya-Mugisha, J. Lucian Davis, Julie Reed, Rohit Ramaswamy, Gareth Parry, Sylvia Sax, Heather Kaplan, Keng-yen Huang, Sabrina Cheng, Susan Yee, Kimberly Hoagwood, Mary McKay, Donna Shelley, Gbenga Ogedegbe, Laurie Miller Brotman, Roman Kislov, John Humphreys, Gill Harvey, Paul Wilson, Robert Lieberthal, Colleen Payton, Mona Sarfaty, George Valko, Rendelle Bolton, Christine Hartmann, Nora Mueller, Sally K. Holmes, Barbara Bokhour, Sarah Ono, Benjamin Crabtree, Leah Gordon, William Miller, Bijal Balasubramanian, Leif Solberg, Deborah Cohen, Kate McGraw, Andrew Blatt, Demietrice Pittman, Helen Kales, Dan Berlowitz, Teresa Hudson, Christian Helfrich, Erin Finley, Ashley Garcia, Kristen Rosen, Claudina Tami, Don McGeary, Mary Jo Pugh, Jennifer Sharpe Potter, Krysttel Stryczek, David Au, Steven Zeliadt, George Sayre, Jennifer Leeman, Allison Myers, Jennifer Grant, Mary Wangen, Tara Queen, Alexandra Morshed, Elizabeth Dodson, Rachel Tabak, Ross C. Brownson, R. Chris Sheldrick, Thomas Mackie, Justeen Hyde, Laurel Leslie, Itzhak Yanovitzky, Matthew Weber, Nicole Gesualdo, Teis Kristensen, Cameo Stanick, Heather Halko, Caitlin Dorsey, Byron Powell, Bryan Weiner, Cara Lewis, Patricia Carreno, Kera Mallard, Tasoula Masina, Candice Monson, Taren Swindle, Zachary Patterson, Leanne Whiteside-Mansell, Rochelle Hanson, Benjamin Saunders, Sonja Schoenwald, Angela Moreland, Sarah Birken, Justin Presseau, David Ganz, Brian Mittman, Deborah Delevan, Jennifer N. Hill, Sara Locatelli, Gemmae Fix, Jeffrey Solomon, Sherri L. Lavela, Victoria Scott, Jonathan Scaccia, Kassy Alia, Brittany Skiles, Abraham Wandersman, Anne Sales, Megan Roberts, Amy Kennedy, Muin J. Khoury, Nina Sperber, Lori Orlando, Janet Carpenter, Larisa Cavallari, Joshua Denny, Amanda Elsey, Fern Fitzhenry, Yue Guan, Carol Horowitz, Julie Johnson, Ebony Madden, Toni Pollin, Victoria Pratt, Tejinder Rakhra-Burris, Marc Rosenman, Corrine Voils, Kristin Weitzel, Ryanne Wu, Laura Damschroder, Christine Lu, Rachel Ceccarelli, Kathleen M. Mazor, Ann Wu, Alanna Kulchak Rahm, Adam H. Buchanan, Marci Schwartz, Cara McCormick, Kandamurugu Manickam, Marc S. Williams, Michael F. Murray, Ngoc-Cam Escoffery, Erin Lebow-Skelley, Hallie Udelson, Elaine Böing, Maria E. Fernandez, Richard J. Wood, Patricia Dolan Mullen, Jenita Parekh, Valerie Caldas, Elizabeth A. Stuart, Shalynn Howard, Gilo Thomas, Jacky M. Jennings, Jennifer Torres, Christine Markham, Ross Shegog, Melissa Peskin, Stephanie Craig Rushing, Amanda Gaston, Gwenda Gorman, Cornelia Jessen, Jennifer Williamson, Dianne Ward, Amber Vaughn, Ellie Morris, Stephanie Mazzucca, Regan Burney, Shoba Ramanadhan, Sara Minsky, Vilma Martinez-Dominguez, Kasisomayajula Viswanath, Megan Barker, Myra Fahim, Arezoo Ebnahmady, Rosa Dragonetti, Peter Selby, Margaret Farrell, Jordan Tompkins, Wynne Norton, Kaelin Rapport, Margaret Hargreaves, Rebekka Lee, Gina Kruse, Charles Deutsch, Emily Lanier, Ashley Gray, Aaron Leppin, Lori Christiansen, Karen Schaepe, Jason Egginton, Megan Branda, Charlene Gaw, Sara Dick, Victor Montori, Nilay Shah, Ariella Korn, Peter Hovmand, Karen Fullerton, Nancy Zoellner, Erin Hennessy, Alison Tovar, Ross Hammond, Christina Economos, Christi Kay, Julie Gazmararian, Emily Vall, Patricia Cheung, Padra Franks, Shannon Barrett-Williams, Paul Weiss, Erica Hamilton, Luana Marques, Louise Dixon, Emily Ahles, Sarah Valentine, Derri Shtasel, Ruben Parra-Cardona, Mary Northridge, Rucha Kavathe, Jennifer Zanowiak, Laura Wyatt, Hardayal Singh, Nadia Islam, Madalena Monteban, Darcy Freedman, Kimberly Bess, Colleen Walsh, Kristen Matlack, Susan Flocke, Heather Baily, Samantha Harden, NithyaPriya Ramalingam, VCE Physical Activity Leadership Team, Rachel Gold, Erika Cottrell, Celine Hollombe, Katie Dambrun, Arwen Bunce, Mary Middendorf, Marla Dearing, Stuart Cowburn, Ned Mossman, Gerry Melgar, Suellen Hopfer, Michael Hecht, Anne Ray, Michelle Miller-Day, Rhonda BeLue, Greg Zimet, Eve-Lynn Nelson, Sandy Kuhlman, Gary Doolittle, Hope Krebill, Ashley Spaulding, Theodore Levin, Michael Sanchez, Molly Landau, Patricia Escobar, Nadia Minian, Aliya Noormohamed, Laurie Zawertailo, Dolly Baliunas, Norman Giesbrecht, Bernard Le Foll, Andriy Samokhvalov, Zachary Meisel, Daniel Polsky, Bruce Schackman, Julia Mitchell, Kaitlyn Sevarino, Sarah Gimbel, Moses Mwanza, Marie Paul Nisingizwe, Catherine Michel, Lisa Hirschhorn, Mahrukh Choudhary, Della Thonduparambil, Paul Meissner, Hilary Pinnock, Melanie Barwick, Christopher Carpenter, Sandra Eldridge, Gonzalo Grandes-Odriozola, Chris Griffiths, Jo Rycroft-Malone, Elizabeth Murray, Anita Patel, Aziz Sheikh, Stephanie J. C. Taylor, Martin Guilliford, Gemma Pearce, Diane Korngiebel, Kathleen West, Wylie Burke, Peggy Hannon, Jeffrey Harris, Kristen Hammerback, Marlana Kohn, Gary K. C. Chan, Riki Mafune, Amanda Parrish, Shirley Beresford, K. Joanne Pike, Rachel Shelton, Lina Jandorf, Deborah Erwin, Thana-Ashley Charles, Laura-Mae Baldwin, Brooke Ike, Jacqueline Fickel, Jason Lind, Diane Cowper, Marguerite Fleming, Amy Sadler, Melinda Dye, Judith Katzburg, Michael Ong, Sarah Tubbesing, Molly Simmons, Autumn Harnish, Sonya Gabrielian, Keith McInnes, Jeffrey Smith, John Ferrand, Elisa Torres, Amy Green, Angela R. Bradbury, Linda J. Patrick-Miller, Brian L. Egleston, Susan M. Domchek, Olufunmilayo I. Olopade, Michael J. Hall, Mary B. Daly, Generosa Grana, Pamela Ganschow, Dominique Fetzer, Amanda Brandt, Rachelle Chambers, Dana F. Clark, Andrea Forman, Rikki S. Gaber, Cassandra Gulden, Janice Horte, Jessica Long, Terra Lucas, Shreshtha Madaan, Kristin Mattie, Danielle McKenna, Susan Montgomery, Sarah Nielsen, Jacquelyn Powers, Kim Rainey, Christina Rybak, Christina Seelaus, Jessica Stoll, Jill Stopfer, Xinxin Shirley Yao, Michelle Savage, Edward Miech, Teresa Damush, Nicholas Rattray, Jennifer Myers, Barbara Homoya, Kate Winseck, Carrie Klabunde, Deb Langer, Avi Aggarwal, Elizabeth Neilson, Lara Gunderson, Marla Gardner, Liam O’Sulleabhain, and Candyce Kroenke
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Medicine (General) ,R5-920 - Published
- 2017
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4. Model framework for governance of genomic research and biobanking in Africa – a content description [version 2; peer review: 3 approved]
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Aminu Yakubu, Paulina Tindana, Alice Matimba, Katherine Littler, Nchangwi Syntia Munung, Ebony Madden, Ciara Staunton, and Jantina De Vries
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Medicine ,Science - Abstract
Genomic research and biobanking are expanding globally, with a promise to fast-track the research needed to improve approaches to disease treatment and prevention through scientific collaborations such as the Human Heredity and Health in Africa (H3Africa) initiative. Integral to this type of research is the availability of samples and data for research. The need for broad access brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise these samples between scientists from the high income and low income countries. Addressing these concerns while promoting genomic research, especially in Africa, requires the implementation of a sound governance framework. In this paper, we describe the contents of a Framework for Best Practice for Genomics Research and biobanking in Africa that was developed, under the auspices of the H3Africa initiative. This framework is broad enough to be used and adapted by African countries to facilitate the development of country-specific guidelines and to help improve the conduct and governance of genomics research.
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- 2018
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5. Model framework for governance of genomic research and biobanking in Africa – a content description [version 1; peer review: 3 approved]
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Aminu Yakubu, Paulina Tindana, Alice Matimba, Katherine Littler, Nchangwi Syntia Munung, Ebony Madden, Ciara Staunton, and Jantina De Vries
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Medicine ,Science - Abstract
Genomic research and biobanking are expanding globally, with a promise to fast-track the research needed to improve approaches to disease treatment and prevention through scientific collaborations such as the Human Heredity and Health in Africa (H3Africa) initiative. Integral to this type of research is the availability of samples and data for research. The need for broad access brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise these samples between scientists from the high income and low income countries. Addressing these concerns while promoting genomic research, especially in Africa, requires the implementation of a sound governance framework. In this paper, we describe the contents of a Framework for Best Practice for Genomics Research and biobanking in Africa that was developed, under the auspices of the H3Africa initiative. This framework is broad enough to be used and adapted by African countries to facilitate the development of country-specific guidelines and to help improve the conduct and governance of genomics research.
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- 2018
- Full Text
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6. Data from Identification of Two Genetic Loci Associated with Leukopenia after Chemotherapy in Patients with Breast Cancer
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Liewei Wang, Richard M. Weinshilboum, Lothar Häberle, Daniel J. Schaid, Alvaro N.A. Monteiro, Wolfgang Janni, Julie M. Cunningham, Brooke L. Fridley, Liang Li, Erin E. Carlson, Gregory D. Jenkins, Kim Doheny, Jane Romm, Jess Shen, Ebony Madden, Diether Lambrechts, Hanna Huebner, Matthias Ruebner, Matthias W. Beckmann, Georg Heinrich, Tanja N. Fehm, Hans Tesch, Andreas Schneeweiss, Andre Reis, Arif B. Ekici, Alexander Hein, Brigitte Rack, Paulo C. Lyra, James N. Ingle, Steve Scully, Duan Liu, and Peter A. Fasching
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Purpose:To identify molecular predictors of grade 3/4 neutropenic or leukopenic events (NLE) after chemotherapy using a genome-wide association study (GWAS).Experimental Design:A GWAS was performed on patients in the phase III chemotherapy study SUCCESS-A (n = 3,322). Genotyping was done using the Illumina HumanOmniExpress-12v1 array. Findings were functionally validated with cell culture models and the genotypes and gene expression of possible causative genes were correlated with clinical treatment response and prognostic outcomes.Results:One locus on chromosome 16 (rs4784750; NLRC5; P = 1.56E-8) and another locus on chromosome 13 (rs16972207; TNFSF13B; P = 3.42E-8) were identified at a genome-wide significance level. Functional validation revealed that expression of these two genes is altered by genotype-dependent and chemotherapy-dependent activity of two transcription factors. Genotypes also showed an association with disease-free survival in patients with an NLE.Conclusions:Two loci in NLRC5 and TNFSF13B are associated with NLEs. The involvement of the MHC I regulator NLRC5 implies the possible involvement of immuno-oncological pathways.
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- 2023
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7. Supplementary Data from Identification of Two Genetic Loci Associated with Leukopenia after Chemotherapy in Patients with Breast Cancer
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Liewei Wang, Richard M. Weinshilboum, Lothar Häberle, Daniel J. Schaid, Alvaro N.A. Monteiro, Wolfgang Janni, Julie M. Cunningham, Brooke L. Fridley, Liang Li, Erin E. Carlson, Gregory D. Jenkins, Kim Doheny, Jane Romm, Jess Shen, Ebony Madden, Diether Lambrechts, Hanna Huebner, Matthias Ruebner, Matthias W. Beckmann, Georg Heinrich, Tanja N. Fehm, Hans Tesch, Andreas Schneeweiss, Andre Reis, Arif B. Ekici, Alexander Hein, Brigitte Rack, Paulo C. Lyra, James N. Ingle, Steve Scully, Duan Liu, and Peter A. Fasching
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Supplementary Data from Identification of Two Genetic Loci Associated with Leukopenia after Chemotherapy in Patients with Breast Cancer
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- 2023
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8. Supplementary Figure from Identification of Two Genetic Loci Associated with Leukopenia after Chemotherapy in Patients with Breast Cancer
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Liewei Wang, Richard M. Weinshilboum, Lothar Häberle, Daniel J. Schaid, Alvaro N.A. Monteiro, Wolfgang Janni, Julie M. Cunningham, Brooke L. Fridley, Liang Li, Erin E. Carlson, Gregory D. Jenkins, Kim Doheny, Jane Romm, Jess Shen, Ebony Madden, Diether Lambrechts, Hanna Huebner, Matthias Ruebner, Matthias W. Beckmann, Georg Heinrich, Tanja N. Fehm, Hans Tesch, Andreas Schneeweiss, Andre Reis, Arif B. Ekici, Alexander Hein, Brigitte Rack, Paulo C. Lyra, James N. Ingle, Steve Scully, Duan Liu, and Peter A. Fasching
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Supplementary Figure from Identification of Two Genetic Loci Associated with Leukopenia after Chemotherapy in Patients with Breast Cancer
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- 2023
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9. Effects of Testing and Disclosing Ancestry-Specific Genetic Risk for Kidney Failure on Patients and Health Care Professionals: A Randomized Clinical Trial
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Girish N. Nadkarni, Kezhen Fei, Michelle A. Ramos, Diane Hauser, Emilia Bagiella, Stephen B. Ellis, Saskia Sanderson, Stuart A. Scott, Tatiana Sabin, Ebony Madden, Richard Cooper, Martin Pollak, Neil Calman, Erwin P. Bottinger, and Carol R. Horowitz
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Adult ,Male ,Health Personnel ,General Medicine ,Disclosure ,Middle Aged ,Apolipoprotein L1 ,Black or African American ,Hypertension ,Humans ,Female ,Genetic Predisposition to Disease ,Genetic Testing ,Renal Insufficiency, Chronic - Abstract
Risk variants in the apolipoprotein L1 (APOL1 [OMIM 603743]) gene on chromosome 22 are common in individuals of West African ancestry and confer increased risk of kidney failure for people with African ancestry and hypertension. Whether disclosing APOL1 genetic testing results to patients of African ancestry and their clinicians affects blood pressure, kidney disease screening, or patient behaviors is unknown.To determine the effects of testing and disclosing APOL1 genetic results to patients of African ancestry with hypertension and their clinicians.This pragmatic randomized clinical trial randomly assigned 2050 adults of African ancestry with hypertension and without existing chronic kidney disease in 2 US health care systems from November 1, 2014, through November 28, 2016; the final date of follow-up was January 16, 2018. Patients were randomly assigned to undergo immediate (intervention) or delayed (waiting list control group) APOL1 testing in a 7:1 ratio. Statistical analysis was performed from May 1, 2018, to July 31, 2020.Patients randomly assigned to the intervention group received APOL1 genetic testing results from trained staff; their clinicians received results through clinical decision support in electronic health records. Waiting list control patients received the results after their 12-month follow-up visit.Coprimary outcomes were the change in 3-month systolic blood pressure and 12-month urine kidney disease screening comparing intervention patients with high-risk APOL1 genotypes and those with low-risk APOL1 genotypes. Secondary outcomes compared these outcomes between intervention group patients with high-risk APOL1 genotypes and controls. Exploratory analyses included psychobehavioral factors.Among 2050 randomly assigned patients (1360 women [66%]; mean [SD] age, 53 [10] years), the baseline mean (SD) systolic blood pressure was significantly higher in patients with high-risk APOL1 genotypes vs those with low-risk APOL1 genotypes and controls (137 [21] vs 134 [19] vs 133 [19] mm Hg; P = .003 for high-risk vs low-risk APOL1 genotypes; P = .001 for high-risk APOL1 genotypes vs controls). At 3 months, the mean (SD) change in systolic blood pressure was significantly greater in patients with high-risk APOL1 genotypes vs those with low-risk APOL1 genotypes (6 [18] vs 3 [18] mm Hg; P = .004) and controls (6 [18] vs 3 [19] mm Hg; P = .01). At 12 months, there was a 12% increase in urine kidney disease testing among patients with high-risk APOL1 genotypes (from 39 of 234 [17%] to 68 of 234 [29%]) vs a 6% increase among those with low-risk APOL1 genotypes (from 278 of 1561 [18%] to 377 of 1561 [24%]; P = .10) and a 7% increase among controls (from 33 of 255 [13%] to 50 of 255 [20%]; P = .01). In response to testing, patients with high-risk APOL1 genotypes reported more changes in lifestyle (a subjective measure that included better dietary and exercise habits; 129 of 218 [59%] vs 547 of 1468 [37%]; P .001) and increased blood pressure medication use (21 of 218 [10%] vs 68 of 1468 [5%]; P = .005) vs those with low-risk APOL1 genotypes; 1631 of 1686 (97%) declared they would get tested again.In this randomized clinical trial, disclosing APOL1 genetic testing results to patients of African ancestry with hypertension and their clinicians was associated with a greater reduction in systolic blood pressure, increased kidney disease screening, and positive self-reported behavior changes in those with high-risk genotypes.ClinicalTrials.gov Identifier: NCT02234063.
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- 2022
10. Guideline for feedback of individual genetic research findings for genomics research in Africa
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Alice Matimba, Stuart Ali, Katherine Littler, Ebony Madden, Patricia Marshall, Sheryl McCurdy, Victoria Nembaware, Laura Rodriguez, Janet Seeley, Paulina Tindana, Aminu Yakubu, and Jantina de Vries
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Genetic Research ,Practice ,Medicine (General) ,Public Health, Environmental and Occupational Health ,health policy ,Genomics ,Infectious and parasitic diseases ,RC109-216 ,health services research ,Feedback ,R5-920 ,Africa ,Humans - Abstract
As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline for consideration of feeding back individual genetic results of health importance in African research projects. This included a decision flowchart, providing a logical framework to assist in decision-making and planning for human genomics research projects. Although presented in the context of the H3Africa Consortium, we believe the principles described, and the decision flowchart presented here is applicable more broadly in African genomics research.
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- 2022
11. Proceedings of the 8th Annual Conference on the Science of Dissemination and Implementation
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Lina Jandorf, Janice Horte, Claire Neely, Christine Hartmann, Jennifer Regan, Lior Turgeman, Laura Wyatt, Avi Aggarwal, Elizabeth Murray, Susan Montgomery, Anne Ray, William Lukesh, Susan Yee, Keng-yen Huang, William L. Miller, Terry Jankowski, Anne E. Sales, Samantha M. Harden, Alexandra B. Morshed, George Valko, Julie Gazmararian, Kristen Schaffner, Marie Paul Nisingizwe, Amy Sadler, Heather Kaplan, Celeste Liebrecht, Jennifer Sharpe Potter, Helen Kales, M. Rashad Massoud, Caity Frail, Christian Rusangwa, Candice Monson, Bernard Le Foll, Gemmae Fix, Justin Presseau, George Sayre, Nicholas A. Rattray, Rebekka Lee, Arne Beck, Vincent Liu, Chris Griffiths, Megan Barker, Thomas Love, Leanne Whiteside-Mansell, Ross Shegog, Susan A. Flocke, Laurie Miller Brotman, Jeffery Pitcock, Moses Mwanza, Kera Mallard, Don McGeary, Rinad S. Beidas, Tara Queen, Thana-Ashley Charles, Toni Pollin, Jennifer Zanowiak, Julie Johnson, Carrie Klabunde, Wendy Lantaff, Martin Guilliford, Sabrina Cheng, Elyse Park, Mary McKay, Patricia Cheung, Marla Gardner, Suellen Hopfer, Julie E Reed, Jamie Park, Sarah M. Nielsen, Andrea Forman, Paul Meissner, Brittany Skiles, Steven B. Zeliadt, Shannon Wiltsey Stirman, Christina D. Economos, Amanda Clark, Rachel Kimerling, Katie Dambrun, Leah Gordon, Wen Wan, Krysttel Stryczek, Shari Bolen, Marc Rosenman, Kimberly K Vesco, Joel Rosenthal, Mona Sarfaty, Lara Gunderson, Hardayal Singh, Ann Donze, Ross A. Hammond, Catherine Michel, Stephanie Taylor, David Au, Rakesh Rao, Chris Shea, Christine Markham, David Smelson, Mary Northridge, K. Joanne Pike, Terra Lucas, Sherri L. Lavela, Mary Wangen, Appathurai Balamurugan, Hope Krebill, Daniel Blonigen, Roman Kislov, Edward J. Miech, Peggy A. Hannon, Myra Fahim, Mary Jo Pugh, Ross C. Brownson, Erika Cottrell, Emmanuela Gakidou, Paul Weiss, Kathryn G. Sapnas, Padra Franks, Shereef Elnahal, Margaret Hargreaves, Candyce Kroenke, Sandra Eldridge, Charles Deutsch, Elizabeth A. Dodson, Mona J. Ritchie, Jennifer Leeman, Barbara Bokhour, Paul Wilson, Christina Seelaus, Gina Kruse, Margaret Handley, Rachelle Chambers, Emily Vall, Norman Giesbrecht, Brian L. Egleston, Ariella R. Korn, Melissa Somma McGivney, Della Thonduparambil, Valerie Caldas, Maggie Wolf, Ashley Stoneburner, David A. Ganz, Patricia Dolan Mullen, Kaelin Rapport, Stephen M. Shortell, Teresa Hudson, John Ferrand, Sarah Ono, Jerome Watts, Allison Rodriguez, Ngoc-Cam Escoffery, Rose McGonigle, Ebony Madden, Donna Shelley, Rachel Sturke, Hillary Peabody, Ned Mossman, Giuseppe Raviola, J. Lucian Davis, Ashley Gray, Antoinette Percy-Laurry, Keith McInnes, Ashley Garcia, Nicole Gesualdo, Benjamin Saunders, Jacqueline J. Fickel, Nilay Shah, Barbara Homoya, Olive Kabajaasi, Amy Kilbourne, Aliya Noormohamed, John Humphreys, Sonya Gabrielian, Jennifer Williamson, Frances K. Barg, Thomas Mackie, Jessica Stoll, Ruben Parra-Cardona, Douglas Einstadter, Neda Laiteerapong, Gary Doolittle, Muin J. Khoury, Nadia Minian, Andrew N Blatt, Sylvia Sax, Edmond Ramly, Arezoo Ebnahmady, Achilles Katamba, Amit Mathur, Celine Hollombe, Christopher Smyser, Brook Watts, Nina Sperber, Sarah Birken, Karina Davidson, Jeffrey Solomon, Rosa Dragonetti, Fern Fitzhenry, Leif Solberg, Megan McCullough, Nina Sayer, Michelle Savage, Ashley Ketterer Gruszkowski, Linda Patrick-Miller, Molly Franke, Nora Mueller, Rachel G. Tabak, Elizabeth Neilson, Tejinder Rakhra-Burris, Laura-Mae Baldwin, Peter Selby, Hal Roberts, F. Sessions Cole, Gerry Melgar, Dianne Ward, Ellie Morris, Jamie Ostroff, Kimberly Hoagwood, Stephanie Mazzucca, Victoria Scott, Katie Halkyard, Jason Egginton, Amy Herschell, Nadia Islam, Danielle McKenna, Erin Lebow-Skelley, Richard J. Wood, Michael F. Murray, Jordan Tompkins, Aleksandra Sasha Milicevic, Lisa R. Hirschhorn, Jo Rycroft-Malone, David W. Lounsbury, Kathleen West, Tanya Olmos, Cassandra Gulden, Shalynn Howard, Stephanie Craig Rushing, Sten Vermund, Margaret M. Farrell, Dominique Fetzer, Linda Fleisher, Lisa Simpson, Michael J. Hall, Lisa M Klesges, Marc S. Williams, Karen Schaepe, Allyson Varley, Wynne E. Norton, Julia Kyle, Rivet Amico, Emily Ahles, Bruce R. Schackman, Erin P. Finley, Kristin Weitzel, Shevin Jacob, Rikki S. Gaber, Pamela Ganschow, Joshua Denny, Victor Montori, JoAnn Kirchner, Lauren Brookman-Frazee, Rhonda BeLue, Zachary Patterson, Jennifer Boggs, Riki Mafune, Sarah J. Shoemaker, Kate Winseck, Joan Smith, Marci Schwartz, Gabriel J. Escobar, Shannon Barrett-Williams, Gary K. C. Chan, Arona Ragins, Beth Ann Petrakis, Liam O’Sulleabhain, David Thornton, Cynthia Vinson, Jacky M. Jennings, Rucha Kavathe, Enrique Torres Hernandez, Elijah Goldberg, Patricia Carreno, Gill Harvey, Nathan Kenya-Mugisha, Brandy Smith, Demietrice Pittman, Enola K. Proctor, Angela Moreland, Kasisomayajula Viswanath, Adam Rose, Jennifer Bacci, Sarah Tubbesing, Kenneth Sherr, Emily Sykes, Shoba Ramanadhan, Nicole A. Stadnick, Amanda Brandt, Abraham Wandersman, Chris Gillespie, R. Chris Sheldrick, Amy Kennedy, Sara Dick, Carolyn M. Clancy, Savio Mwaka, Adithya Cattamanchi, Mahrukh Choudhary, Sruthi Buddai, Mark S Bauer, Generosa Grana, Shamik Trivedi, Gwenda Gorman, Deb Langer, Karissa Fenwick, Darcy A. Freedman, Jason Lind, Cara C. Lewis, Steven Lindley, Deborah O. Erwin, Melissa Peskin, Kristen D. Rosen, Terrence L. Hubert, Michael Ong, Aziz Sheikh, Justeen Hyde, Zachary F. Meisel, Claudina Tami, Greg Zimet, Jennifer Grant, Gerald F. Kominski, Jessica M. Long, Allison Myers, Chris Carpenter, Rachel Ceccarelli, Marla Dearing, Sharon Straus, Stephanie Smith, Michael A. Sanchez, Angela Park, Ellen Jones, Luisa Manfredi, Ravi Shah, Jacquelyn Powers, Cara McCormick, Shusmita Rashid, Victoria Pratt, Miya L. Barnett, Michael Parchman, Elaine Böing, Suzanne Heurtin-Roberts, Anita Patel, Christine Lu, Christi Kay, Jeremy Thomas, Craig Rosen, Gbenga Ogedegbe, Amanda T. Parrish, Diane R Lauver, Lori Orlando, Brian S. Mittman, Hallie Udelson, Rachel Gold, Erica Hamilton, José Salato, Youxu C. Tjader, Benjamin Turk, Giselle Perez, Amber Vaughn, Jeffrey R. Smith, Eric R. Larson, Rohit Ramaswamy, Colleen Payton, Jodie A. Trafton, Elisa M. Torres, Cameo Stanick, Bryan J. Weiner, Beatha Nyirandagijimana, Rachel C. Shelton, Rebecca Lengnick-Hall, Michael W. Kennedy, Madalena Monteban, Megan Roberts, Laurel Leslie, Autumn Harnish, Ann Wu, Janet Carpenter, Alexander Fiks, Carol R. Horowitz, Michael Hecht, Andriy V. Samokhvalov, Amanda Gaston, Olufunmilayo I. Olopade, Elizabeth A. Stuart, Dan Berlowitz, Matthew Weber, Amanda Vogel, Yinfei Kong, Rochelle Hanson, Lee Fleisher, Stephen Gloyd, Jay Carruthers, Melissa Courvoisier, Kim Rainey, Carmel Nichols, Christie M Bartels, Gregory A. Aarons, Kristin Mattie, Jonathan Scaccia, Vilma Martinez-Dominguez, Charlene Gaw, Christina Rybak, Nancy Zoellner, Leighann Kimble, Xinxin Shirley Yao, Kandamurugu Manickam, Caitlin Dorsey, Nathalie Moise, Marguerite Fleming, Meghan Lane-Fall, Michael Leo, Carolyn Audet, Stefanie Ferreri, Laura J. Damschroder, Kate McGraw, Colleen Walsh, Ross Brownson, Lindsey Zimmerman, Teresa M. Damush, Lori Christiansen, Hildegarde Mukasakindi, Mary B. Daly, Itzhak Yanovitzky, Laura Di Taranti, Mary Middendorf, Ashley Scudder, Diane Korngiebel, Kimberly Bess, Sarah Valentine, Erick G. Guerrero, Jennifer N. Hill, Sally K. Holmes, Hector P. Rodriguez, Sarah Greene, Joanna Bulkley, Theodore Levin, Cory Hamata, Michelle Barbaresso, Melanie Barwick, Margie Snyder, Sonja K. Schoenwald, Sara Locatelli, Jeffrey R. Harris, Laurie Zawertailo, Adam H. Buchanan, Erin Staab, Isomi Miake-Lye, Emily Lanier, Eva Woodward, David A. Chambers, Dolly Baliunas, Rachel Gruver, Amanda Elsey, Rahul Bhargava, Amy E. Green, Emmeline Chuang, Larissa Myaskovsky, Gemma Pearce, Megan Smith, Melinda Dye, Emily Rentschler Drobek, Lauren Peccoralo, Louise Dixon, Kassy Alia, Daniel Polsky, NithyaPriya Ramalingam, Byron J. Powell, Taren Swindle, Molly M. Simmons, Derri Shtasel, Brian Hackett, Lloyd Sederer, Michelle Miller-Day, Tasoula Masina, Kathleen M. Mazor, Gilo Thomas, Andrea Nevedal, Kaitlyn Sevarino, Julia E. Moore, Susan Essock, Patricia Kipnis, Gila Neta, Kyle Bigham, Christian Helfrich, Peter Hovmand, Sarah Gimbel, Luana Marques, Rendelle Bolton, Yue Guan, Benjamin Teeter, Angela R. Bradbury, Kristen Hammerback, Susan M. Domchek, Heather Baily, Dana F. Clark, Geoffrey M. Curran, Randall Cebul, Anna S. Lau, Shirley Beresford, Larisa Cavallari, Gonzalo Grandes-Odriozola, Eve-Lynn Nelson, Matthew Cummings, Ashley Spaulding, Bijal Balasubramanian, Brooke Ike, Arwen Bunce, Deborah J. Cohen, Jennifer Torres, Heather Halko, Karen Fullerton, Erin Hennessy, Benjamin Crabtree, Carol VanDeusen Lukas, Shawna Smith, Todd Molfenter, Gareth Parry, Kea Turner, Laura Gibson, Patricia Escobar, Becky Yano, Sobia Khan, Shreshtha Madaan, Teis Kristensen, Stuart Cowburn, Allen L. Gifford, Judith Katzburg, Kate Beadle, Maria E. Fernandez, Hilary Pinnock, Alanna Kulchak Rahm, Robert Lieberthal, Sarah Taber-Thomas, Daniel Eisenberg, Regan Burney, Amy Jones, Andrea Ippolito, Donald R. Miller, Christine Timko, Deborah Delevan, Marlana Kohn, Sara Minsky, Wylie Burke, Ulrica von Thiele Schwarz, Megan E. Branda, Alison Tovar, Corrine Voils, Kristen Matlack, Holly Swan, Vera Yakovchenko, Brian Austin, Benjamin Henwood, Mari-Lynn Drainoni, R. Ryanne Wu, Sandy Kuhlman, Jenita Parekh, Jennifer Myers, Aaron Leppin, Julia Mitchell, Robert J. Monte, Cornelia Jessen, Robert Orazem, Diane Cowper, Mary Hook, Jill Stopfer, and Molly Landau
- Subjects
medicine.medical_specialty ,education.field_of_study ,business.industry ,Health Policy ,Public health ,Population ,Public Health, Environmental and Occupational Health ,Health services research ,Library science ,Health Informatics ,General Medicine ,Population health ,Health equity ,3. Good health ,03 medical and health sciences ,0302 clinical medicine ,Community health ,Health care ,medicine ,030212 general & internal medicine ,business ,education ,030217 neurology & neurosurgery ,Health policy - Abstract
A1 Introduction to the 8th Annual Conference on the Science of Dissemination and Implementation: Optimizing Personal and Population Health David Chambers1, Lisa Simpson2 1Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD, 20850, USA; 2AcademyHealth, Washington, DC, 20036, USA For the second year in a row, we are pleased to be able to share the proceedings of the Annual Conference on the Science of Dissemination and Implementation in Health, a large meeting reflecting the expanding and evolving research field that seeks to optimize the use of evidence, interventions, and tools from health research within the myriad of settings where people receive health care, make health-related decisions, and increase knowledge of influences on the health of the population. We once again benefitted from a strong partnership, co-led by AcademyHealth and the National Institutes of Health (NIH), with co-sponsorship from the Agency for Healthcare Research and Quality (AHRQ), the Patient Centered Outcomes Research Institute (PCORI), the Robert Wood Johnson Foundation (RWJF), the US Department of Veterans Affairs (VA), and the WT Grant Foundation. In addition, we benefitted from the collaboration of staff from the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). NIH and AcademyHealth again co-led the program planning committee, which focused on the development of the plenary sessions, and convened a scientific advisory panel to suggest speakers and advise on the overall conference development. The planning committee identified four key areas around which to focus the plenary panels and keynote address. Dr. America Bracho, M.D., M.P.H., Executive Director of Latino Health Access in Orange County, California, spoke about the opportunities for implementation science to inform efforts to improve community health and engage underserved populations. The three plenary panels each focused on a significant future direction for dissemination and implementation (D & I) research: the interface between D&I science and population health, emerging opportunities for global implementation science, and the challenges around implementation of precision medicine. The plenary sessions were complemented by facilitated lunchtime discussions on the same three topics, which offered participants an opportunity to identify key research questions for each and brainstorm next steps. Synopses of the lunchtime discussions are included in this supplement. Given the overwhelming success of the 2014 conference and the large number of abstracts received in 2014 (660), the program planning committee identified eight program tracks for abstract submitters to respond to, and through which the concurrent sessions of the conference would be organized. These tracks—Behavioral Health, Big Data and Technology for Dissemination and Implementation Research, Clinical Care Settings, Global Dissemination and Implementation, Promoting Health Equity and Eliminating Disparities, Health Policy Dissemination and Implementation, Prevention and Public Health, and Models, Measures and Methods— were designed to enable conference participants to follow a consistent theme across the multiple sessions of the conference and form the structure of this supplement. The call for abstracts, including individual paper presentations, individual posters and panel presentations, resulted in 515 submissions, spread across the eight thematic tracks. Over one hundred reviewers devoted their time to ensuring a comprehensive and expert review, and reviews were conducted within each track and coordinated by the track leads. For the final program, 64 oral presentations, 12 panels, and 263 posters were presented over the two-day meeting. Slides for the oral presentations and panels (with the agreement of the authors) were posted on the conference website (http://diconference.academyhealth.org/archives/2015archives) and all abstracts were included on the conference webapp (https://academyhealth.confex.com/academyhealth/2015di/meetingapp.cgi). This supplement has compiled the abstracts for presented papers, panel sessions, and lunchtime discussions from the 8th Annual Meeting on the Science of Dissemination and Implementation in Health: Optimizing Personal and Population Health. We are pleased to have the abstracts from the conference together in one volume once again, and look forward to the 9th Annual meeting, scheduled for December in Washington, D.C.
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- 2016
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