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4. The Association of Prenatal Diagnoses with Mortality and Long-Term Morbidity in Children with Specific Isolated Congenital Anomalies: A European Register-Based Cohort Study

Author

Heino, Anna, Morris, Joan K., Garne, Ester, Baldacci, Silvia, Barisic, Ingeborg, Cavero-Carbonell, Clara, García-Villodre, Laura, Given, Joanne, Jordan, Sue, Loane, Maria, Lutke, L. Renée, Neville, Amanda J., Santoro, Michele, Scanlon, Ieuan, Tan, Joachim, de Walle, Hermien E. K., Kiuru-Kuhlefelt, Sonja, and Gissler, Mika

Published
2024
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5. Maternal diabetes and risk of attention-deficit/hyperactivity disorder in offspring in a multinational cohort of 3.6 million mother–child pairs

Author

Chan, Adrienne Y. L., Gao, Le, Hsieh, Miyuki Hsing-Chun, Kjerpeseth, Lars J., Avelar, Raquel, Banaschewski, Tobias, Chan, Amy Hai Yan, Coghill, David, Cohen, Jacqueline M., Gissler, Mika, Harrison, Jeff, Ip, Patrick, Karlstad, Øystein, Lau, Wallis C. Y., Leinonen, Maarit K., Leung, Wing Cheong, Liao, Tzu-Chi, Reutfors, Johan, Shao, Shih-Chieh, Simonoff, Emily, Tan, Kathryn Choon Beng, Taxis, Katja, Tomlin, Andrew, Cesta, Carolyn E., Lai, Edward Chia-Cheng, Zoega, Helga, Man, Kenneth K. C., and Wong, Ian C. K.

Published
2024
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11. Web-Based Versus Traditional Paper Questionnaires: A Mixed-Mode Survey With a Nordic Perspective

Author

Hohwü, Lena, Lyshol, Heidi, Gissler, Mika, Jonsson, Stefan Hrafn, Petzold, Max, and Obel, Carsten

Subjects
Computer applications to medicine. Medical informatics, R858-859.7, Public aspects of medicine, RA1-1270
Abstract

BackgroundSurvey response rates have been declining over the past decade. The more widespread use of the Internet and Web-based technologies among potential health survey participants suggests that Web-based questionnaires may be an alternative to paper questionnaires in future epidemiological studies. ObjectiveTo compare response rates in a population of parents by using 4 different modes of data collection for a questionnaire survey of which 1 involved a nonmonetary incentive. MethodsA random sample of 3148 parents of Danish children aged 2-17 years were invited to participate in the Danish part of the NordChild 2011 survey on their children’s health and welfare. NordChild was conducted in 1984 and 1996 in collaboration with Finland, Iceland, Norway, and Sweden using mailed paper questionnaires only. In 2011, all countries used conventional paper versions only except Denmark where the parents were randomized into 4 groups: (1) 789 received a paper questionnaire only (paper), (2) 786 received the paper questionnaire and a log-in code to the Web-based questionnaire (paper/Web), (3) 787 received a log-in code to the Web-based questionnaire (Web), and (4) 786 received log-in details to the Web-based questionnaire and were given an incentive consisting of a chance to win a tablet computer (Web/tablet). In connection with the first reminder, the nonresponders in the paper, paper/Web, and Web groups were also present with the opportunity to win a tablet computer as a means of motivation. Descriptive analysis was performed using chi-square tests. Odds ratios were used to estimate differences in response rates between the 4 modes. ResultsIn 2011, 1704 of 3148 (54.13%) respondents answered the Danish questionnaire. The highest response rate was with the paper mode (n=443, 56.2%). The other groups had similar response rates: paper/Web (n=422, 53.7%), Web (n=420, 53.4%), and Web/tablet (n=419, 53.3%) modes. Compared to the paper mode, the odds for response rate in the paper/Web decreased by 9% (OR 0.91, 95% CI 0.74-1.10) and by 11% (OR 0.89, 95% CI 0.73-1.09) in the Web and Web/tablet modes. The total number of responders for NordChild declined from 10,291 of 15,339 (67.09%) in 1984 and 10,667 of 15,254 (69.93%) in 1996 to 7805 of 15,945 (48.95%) in 2011 with similar declines in all 5 Nordic countries. ConclusionsWeb-based questionnaires could replace traditional paper questionnaires with minor effects on response rates and lower costs. The increasing effect on the response rate on participants replying for a nonmonetary incentive could only be estimated within the 2 Web-based questionnaire modes before the first reminder. Alternative platforms to reach higher participation rates in population surveys should reflect the development of electronic devices and the ways in which the population primarily accesses the Internet.

Published
2013
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12. Disease Burden Attributed to Drug use in the Nordic Countries: a Systematic Analysis for the Global Burden of Diseases, Injuries, and Risk Factors Study 2019

Author

Agardh, Emilie E., Allebeck, Peter, Knudsen, Ann Kristin Skrindo, Aronsson, Amanda E., Flodin, Pär, Eikemo, Terje A., Bangah, Paul R., Skogen, Jens Christoffer, Gissler, Mika, Rönkä, Sanna, McGrath, John J., Sigurvinsdóttir, Rannveig, Dadras, Omid, Deuba, Keshab, Hedna, Khedidja, Mentis, Alexios-Fotios A., Sagoe, Dominic, Shiri, Rahman, Weye, Nanna, Hay, Simon I., Murray, Christopher J. L., Naghavi, Mohsen, Pasovic, Maja, Vos, Theo, Wennberg, Peter, and Danielsson, Anna-Karin

Published
2023
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13. Antipsychotic use during pregnancy and risk of specific neurodevelopmental disorders and learning difficulties in children: a multinational cohort study

Author

Bruno, Claudia, Cesta, Carolyn E., Hjellvik, Vidar, Ulrichsen, Sinna Pilgaard, Bjørk, Marte-Helene, Esen, Buket Öztürk, Gillies, Malcolm B., Gissler, Mika, Havard, Alys, Karlstad, Øystein, Leinonen, Maarit K., Nørgaard, Mette, Pearson, Sallie-Anne, Reutfors, Johan, Furu, Kari, Cohen, Jacqueline M., and Zoega, Helga

Published
2024
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22. Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries

Author

Calvert, Clara, Brockway, Meredith (Merilee), Zoega, Helga, Miller, Jessica E., Been, Jasper V., Amegah, Adeladza Kofi, Racine-Poon, Amy, Oskoui, Solmaz Eradat, Abok, Ishaya I., Aghaeepour, Nima, Akwaowo, Christie D., Alshaikh, Belal N., Ayede, Adejumoke I., Bacchini, Fabiana, Barekatain, Behzad, Barnes, Rodrigo, Bebak, Karolina, Berard, Anick, Bhutta, Zulfiqar A., Brook, Jeffrey R., Bryan, Lenroy R., Cajachagua-Torres, Kim N., Campbell-Yeo, Marsha, Chu, Dinh-Toi, Connor, Kristin L., Cornette, Luc, Cortés, Sandra, Daly, Mandy, Debauche, Christian, Dedeke, Iyabode Olabisi F., Einarsdóttir, Kristjana, Engjom, Hilde, Estrada-Gutierrez, Guadalupe, Fantasia, Ilaria, Fiorentino, Nicole M., Franklin, Meredith, Fraser, Abigail, Gachuno, Onesmus W., Gallo, Linda A., Gissler, Mika, Håberg, Siri E., Habibelahi, Abbas, Häggström, Jonas, Hookham, Lauren, Hui, Lisa, Huicho, Luis, Hunter, Karen J., Huq, Sayeeda, KC, Ashish, Kadambari, Seilesh, Kelishadi, Roya, Khalili, Narjes, Kippen, Joanna, Le Doare, Kirsty, Llorca, Javier, Magee, Laura A., Magnus, Maria C., Man, Kenneth K. C., Mburugu, Patrick M., Mediratta, Rishi P., Morris, Andrew D., Muhajarine, Nazeem, Mulholland, Rachel H., Bonnard, Livia Nagy, Nakibuuka, Victoria, Nassar, Natasha, Nyadanu, Sylvester D., Oakley, Laura, Oladokun, Adesina, Olayemi, Oladapo O., Olutekunbi, Olanike A., Oluwafemi, Rosena O., Ogunkunle, Taofik O., Orton, Chris, Örtqvist, Anne K., Ouma, Joseph, Oyapero, Oyejoke, Palmer, Kirsten R., Pedersen, Lars H., Pereira, Gavin, Pereyra, Isabel, Philip, Roy K., Pruski, Dominik, Przybylski, Marcin, Quezada-Pinedo, Hugo G., Regan, Annette K., Rhoda, Natasha R., Rihs, Tonia A., Riley, Taylor, Rocha, Thiago Augusto Hernandes, Rolnik, Daniel L., Saner, Christoph, Schneuer, Francisco J., Souter, Vivienne L., Stephansson, Olof, Sun, Shengzhi, Swift, Emma M., Szabó, Miklós, Temmerman, Marleen, Tooke, Lloyd, Urquia, Marcelo L., von Dadelszen, Peter, Wellenius, Gregory A., Whitehead, Clare, Wong, Ian C. K., Wood, Rachael, Wróblewska-Seniuk, Katarzyna, Yeboah-Antwi, Kojo, Yilgwan, Christopher S., Zawiejska, Agnieszka, Sheikh, Aziz, Rodriguez, Natalie, Burgner, David, Stock, Sarah J., and Azad, Meghan B.

Published
2023
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26. Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences

Author

Micai, Martina, Ciaramella, Antonio, Salvitti, Tommaso, Fulceri, Francesca, Fatta, Laura Maria, Poustka, Luise, Diehm, Robert, Iskrov, Georgi, Stefanov, Rumen, Guillon, Quentin, Rogé, Bernadette, Staines, Anthony, Sweeney, Mary Rose, Boilson, Andrew Martin, Leósdóttir, Thora, Saemundsen, Evald, Moilanen, Irma, Ebeling, Hanna, Yliherva, Anneli, Gissler, Mika, Parviainen, Tarja, Tani, Pekka, Kawa, Rafal, Vicente, Astrid, Rasga, Célia, Budisteanu, Magdalena, Dale, Ian, Povey, Carol, Flores, Noelia, Jenaro, Cristina, Monroy, Maria Luisa, Primo, Patricia García, Charman, Tony, Cramer, Susanne, Warberg, Christine Kloster, Canal-Bedia, Ricardo, Posada, Manuel, Scattoni, Maria Luisa, and Schendel, Diana

Abstract

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.

Published
2022
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28. Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study

Author

Bakker, Marian K., Loane, Maria, Garne, Ester, Ballardini, Elisa, Cavero-Carbonell, Clara, García, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jamry-Dziurla, Anna, Jordan, Sue, Urhoj, Stine Kjaer, Latos-Bieleńska, Anna, Limb, Elisabeth, Lutke, Renee, Neville, Amanda J., Pierini, Anna, Santoro, Michele, Scanlon, Ieuan, Tan, Joachim, Wellesley, Diana, de Walle, Hermien E. K., and Morris, Joan K.

Published
2023
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30. Interpregnancy intervals and adverse birth outcomes in high-income countries: An international cohort study

Author

Tessema, Gizachew A, Marinovich, M Luke, Håberg, Siri E, Gissler, Mika, Mayo, Jonathan A, Nassar, Natasha, Ball, Stephen, Betrán, Ana Pilar, Gebremedhin, Amanuel T, de Klerk, Nick, Magnus, Maria C, Marston, Cicely, Regan, Annette K, Shaw, Gary M, Padula, Amy M, and Pereira, Gavin

Subjects
Reproductive Medicine, Midwifery, Biomedical and Clinical Sciences, Health Sciences, Perinatal Period - Conditions Originating in Perinatal Period, Prevention, Pediatric, Reproductive health and childbirth, Good Health and Well Being, Adult, Birth Intervals, Cohort Studies, Developed Countries, Female, Humans, Infant, Low Birth Weight, Infant, Newborn, Infant, Small for Gestational Age, Longitudinal Studies, Maternal Age, Pregnancy, Pregnancy Outcome, Premature Birth, Young Adult, General Science & Technology
Abstract

BackgroundMost evidence for interpregnancy interval (IPI) and adverse birth outcomes come from studies that are prone to incomplete control for confounders that vary between women. Comparing pregnancies to the same women can address this issue.MethodsWe conducted an international longitudinal cohort study of 5,521,211 births to 3,849,193 women from Australia (1980-2016), Finland (1987-2017), Norway (1980-2016) and the United States (California) (1991-2012). IPI was calculated based on the time difference between two dates-the date of birth of the first pregnancy and the date of conception of the next (index) pregnancy. We estimated associations between IPI and preterm birth (PTB), spontaneous PTB, and small-for-gestational age births (SGA) using logistic regression (between-women analyses). We also used conditional logistic regression comparing IPIs and birth outcomes in the same women (within-women analyses). Random effects meta-analysis was used to calculate pooled adjusted odds ratios (aOR).ResultsCompared to an IPI of 18-23 months, there was insufficient evidence for an association between IPI 24 month IPIs.ConclusionsWe found consistently elevated odds of adverse birth outcomes following long IPIs. IPI shorter than 6 months were associated with elevated risk of spontaneous PTB, but there was insufficient evidence for increased risk of other adverse birth outcomes. Current recommendations of waiting at least 24 months to conceive after a previous pregnancy, may be unnecessarily long in high-income countries.

Published
2021

35. Real-World Experiences in Autistic Adult Diagnostic Services and Post-Diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

Author

Scattoni, Maria Luisa, Micai, Martina, Ciaramella, Antonio, Salvitti, Tommaso, Fulceri, Francesca, Fatta, Laura Maria, Poustka, Luise, Diehm, Robert, Iskrov, Georgi, Stefanov, Rumen, Guillon, Quentin, Rogé, Bernadette, Staines, Anthony, Sweeney, Mary Rose, Boilson, Andrew Martin, Leósdóttir, Thora, Saemundsen, Evald, Moilanen, Irma, Ebeling, Hanna, Yliherva, Anneli, Gissler, Mika, Parviainen, Tarja, Tani, Pekka, Kawa, Rafal, Vicente, Astrid, Rasga, Célia, Budisteanu, Magdalena, Dale, Ian, Povey, Carol, Flores, Noelia, Jenaro, Cristina, Monroy, Maria Luisa, Primo, Patricia García, Charman, Tony, Cramer, Susanne, Warberg, Christine Kloster, Canal-Bedia, Ricardo, Posada, Manuel, and Schendel, Diana

Abstract

Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.

Published
2021
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37. Small babies, big risks: global estimates of prevalence and mortality for vulnerable newborns to accelerate change and improve counting

Author

Ashorn, Per, Black, Robert E, Lawn, Joy E, Ashorn, Ulla, Klein, Nigel, Hofmeyr, G Justus, Temmerman, Marleen, Askari, Sufia, Ohuma, Eric O, Moller, Ann-Beth, Bradley, Ellen, Chakwera, Samuel, Hussain-Alkhateeb, Laith, Lewin, Alexandra, Okwaraji, Yemisrach B, Retno Mahanani, Wahyu, White Johansson, Emily, Lavin, Tina, Estevez Fernandez, Diana, Gatica Domínguez, Giovanna, de Costa, Ayesha, Cresswell, Jenny A, Krasevec, Julia, Blencowe, Hannah, Requejo, Jennifer, Moran, Allisyn C, Pingray, Veronica, Cormick, Gabriela, Gibbons, Luz, Belizan, José, Guevel, Carlos, Warrilow, Kara, Gordon, Adrienne, Flenady, Vicki, Sexton, Jessica, Lawford, Harriet, Paixao, Enny S., Rocha Falcão, Ila, Lima Barreto, Mauricio, Lisonkova, Sarka, Wen, Qi, Mardones, Francisco, Caulier-Cisterna, Raúl, Acuña, José, Velebil, Petr, Jirova, Jitka, Horváth-Puhó, Erzsébet, Sørensen, Henrik Toft, Sakkeus, Luule, Abuladze, Liili, Gissler, Mika, Moradi-Lakeh, Maziar, Heidarzadeh, Mohammad, Khalili, Narjes, A. Yunis, Khalid, Al Bizri, Ayah, Nakad, Pascale, Devi Karalasingam, Shamala, R Jeganathan, J Ravichandran, binti Baharum, Nurakman, Suárez-Idueta, Lorena, Barranco Flores, Arturo, Gonzalez Roldan, Jesus F, Lopez Alvarez, Sonia, van Dijk, Aimée E., Broeders, Lisa, Huicho, Luis, Quezada Pinedo, Hugo G, Cajachagua-Torres, Kim N, Carrillo-Larco, Rodrigo M, Tarazona Meza, Carla Estefania, Guzman-Vilca, Wilmer Cristobal, Olukade, Tawa O., Ali, Hamdy A., Alyafei, Fawziya, AlQubaisi, Mai, Alturk, Mohamad R, Kim, Ho Yeon, Cho, Geum Joon, Razaz, Neda, Söderling, Jonas, Smith, Lucy K, Kurinczuk, Jennifer J, Matthews, Ruth J, Manktelow, Bradley N, Draper, Elizabeth S, Fenton, Alan C, Lowry, Estelle, Rowland, Neil, Wood, Rachael, Monteath, Kirsten, Pereyra, Isabel, Pravia, Gabriella, Davis, Celina, Clarke, Samantha, Wu, Lee S.F., Yoshida, Sachiyo, Bahl, Rajiv, Grandi, Carlos, Labrique, Alain B, Rashid, Mabhubur, Ahmed, Salahuddin, Roy, Arunangshu D., Haque, Rezwanul, Shaikh, Saijuddin, Baqui, Abdullah H., Saha, Samir K., Khanam, Rasheda, Rahman, Sayedur, Shapiro, Roger, Zash, Rebecca, Silveira, Mariângela F., Buffarini, Romina, Kolsteren, Patrick, Lachat, Carl, Huybregts, Lieven, Roberfroid, Dominique, Zeng, Lingxia, Zhu, Zhonghai, He, Jianrong, Qui, Xiu, Gebreyesus, Seifu H., Tesfamariam, Kokeb, Bekele, Delayehu, Chan, Grace, Baye, Estifanos, Workneh, Firehiwot, Asante, Kwaku P., Boanmah-Kaali, Ellen, Adu-Afarwuah, Seth, Dewey, Kathryn G., Gyaase, Stephaney, Wylie, Blair J., Kirkwood, Betty R., Manu, Alexander, Thulasiraj, Ravilla D, Tielsch, James, Chowdhury, Ranadip, Taneja, Sunita, Babu, Giridhara R, Shriyan, Prafulla, Maleta, Kenneth, Mangani, Charles, Acevedo-Gallegos, Sandra, Rodriguez-Sibaja, Maria J., Khatry, Subarna K., LeClerq, Steven C., Mullany, Luke C., Jehan, Fyezah, Ilyas, Muhammad, Rogerson, Stephen J., Unger, Holger W., Ghosh, Rakesh, Musange, Sabine, Ramokolo, Vundli, Zembe-Mkabile, Wanga, Lazzerini, Marzia, Mohamed, Rishard, Wang, Dongqing, Fawzi, Wafaie W., Minja, Daniel T.R., Schmiegelow, Christentze, Masanja, Honorati, Smith, Emily, Lusingu, John P.A., Msemo, Omari A., Kabole, Fathma M., Slim, Salim N., Keentupthai, Paniya, Mongkolchati, Aroonsri, Kajubi, Richard, Kakuru, Abel, Waiswa, Peter, Walker, Dilys, Hamer, Davidson H., Semrau, Katherine E.A., Chaponda, Enesia B., Chico, R. Matthew, Banda, Bowen, Musokotwane, Kebby, Manasyan, Albert, Pry, Jake M., Chasekwa, Bernard, Humphrey, Jean, Shamim, Abu Ahmed, Christian, Parul, Ali, Hasmot, Klemm, Rolf D.W., Massie, Alan B., Mitra, Maithili, Mehra, Sucheta, Schulze, Kerry J., Shamim, Abu Amed, Sommer, Alfred, Ullah, Barkat, West, Keith P., Jr, Begum, Nazma, Chowdhury, Nabidul Haque, Islam, Shafiqul, Mitra, Dipak Kumar, Quaiyum, Abdul, Diseko, Modiegi, Makhema, Joseph, Cheng, Yue, Guo, Yixin, Yuan, Shanshan, Roro, Meselech, Shikur, Bilal, Goddard, Frederick, Haneuse, Sebastien, Hunegnaw, Bezawit, Berhane, Yemane, Worku, Alemayehu, Kaali, Seyram, Arnold, Charles D., Jack, Darby, Amenga-Etego, Seeba, Hurt, Lisa, Shannon, Caitlin, Soremekun, Seyi, Bhandari, Nita, Martines, Jose, Mazumder, Sarmila, Ana, Yamuna, R, Deepa, Hallamaa, Lotta, Pyykkö, Juha, Lumbreras-Marquez, Mario I., Mendoza-Carrera, Claudia E., Hussain, Atiya, Karim, Muhammad, Kausar, Farzana, Mehmood, Usma, Nadeem, Naila, Nisar, Muhammad Imran, Sajid, Muhammad, Mueller, Ivo, Ome-Kaius, Maria, Butrick, Elizabeth, Sayinzoga, Felix, Mariani, Ilaria, Urassa, Willy, Theander, Thor, Deloron, Phillippe, Nielsen, Birgitte Bruun, Muhihi, Alfa, Noor, Ramadhani Abdallah, Bygbjerg, Ib, Moeller, Sofie Lykke, Aftab, Fahad, Ali, Said M., Dhingra, Pratibha, Dhingra, Usha, Dutta, Arup, Sazawal, Sunil, Suleiman, Atifa, Mohammed, Mohammed, Deb, Saikat, Kamya, Moses R., Nakalembe, Miriam, Mulowooz, Jude, Santos, Nicole, Biemba, Godfrey, Herlihy, Julie M., Mbewe, Reuben K., Mweena, Fern, Yeboah-Antwi, Kojo, Bruce, Jane, Chandramohan, Daniel, Prendergast, Andrew, Idueta, Lorena Suárez, Hazel, Elizabeth, Erchick, Daniel J, Yargawa, Judith, Katz, Joanne, Lee, Anne C C, Diaz, Mike, Salasibew, Mihretab, Hayashi, Chika, and Borghi, Elaine

Published
2023
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39. A national initiative in data science for health: an evaluation of the UK Farr Institute

Author

Hemingway, H, Lyons, R, Li, Q, Buchan, I, Ainsworth, J, Pell, J, Morris, A, Barnes, Michael R, Bedford, Helen, Bennie, Marion, Blandford, Ann, Briggs, Andy, Brocklehurst, Peter, Brophy, Sinead, Brown, Gavin, Burton, Paul, Butler, Christopher, Capewell, Simon, Carpenter, James, Carroll, John, Cassell, Jackie A, Castillo, Fortunato, Catchpole, Mike, Caulfield, Mark, Colhoun, Helen, Coveney, Peter, Cunningham-Burley, Sarah, Custovic, Adnan, Deanfield, John, Denaxas, Spiros, Dennis, Michael, Dezateux, Carol, Dibben, Chris, Diggle, Peter, Dixon, Will, Dunn, Graham, Emam, Khaled El, Fone, David, Ford, David, Ford, Ian, Frank, John, Freemantle, Nick, Gabbe, Belinda, Gallacher, John, Gibson, Martin, Gilbert, Ruth, Gissler, Mika, Goble, Carol, Goldberg, Andy, Gravenor, Mike, Gunnell, David, Hannaford, Phil, Hayward, Andrew, Hickman, Matthew, Hingorani, Aroon, Holm, Soren, Holman, Cashel, John, Gareth, John, Ann, Jones, Kerina, Kalra, Dipak, Laurie, Graeme, Lewis, Shon, Lloyd, Keith, Lowe, Sarah, McCowan, Colin, Macleod, John, Martin, Richard M, Moore, Anthony, Moore, Laurence, Nazareth, Irwin, Nenadic, Goran, Paranjothy, Shantini, Parmar, Max, Pebody, Richard, Petersen, Steffen, Petersen, Irene, Pillay, Deenan, Preen, David, Pickett, Kate, Pritchard-Jones, Kathy, Przulj, Natasa, Renehan, Andrew, Roberts, Stephen, Robson, John, Rodgers, Sarah, Rossor, Martin, Russell, Ian, Shawe-Taylor, John, Sheikh, Aziz, Siebert, Stefan, Snooks, Helen, Sperrin, Matthew, Stephenson, Judith, Sullivan, Frank, Taylor, Chris, Taylor, Paul, Timmis, Adam, and Ward, Hester JT

Subjects
Information and Computing Sciences, Library and Information Studies, Health Sciences, Generic health relevance, Health sciences, Human society, Information and computing sciences
Abstract

ObjectiveTo evaluate the extent to which the inter-institutional, inter-disciplinary mobilisation of data and skills in the Farr Institute contributed to establishing the emerging field of data science for health in the UK.Design and outcome measuresWe evaluated evidence of six domains characterising a new field of science:defining central scientific challenges,demonstrating how the central challenges might be solved,creating novel interactions among groups of scientists,training new types of experts,re-organising universities,demonstrating impacts in society.We carried out citation, network and time trend analyses of publications, and a narrative review of infrastructure, methods and tools.SettingFour UK centres in London, North England, Scotland and Wales (23 university partners), 2013-2018.Results1. The Farr Institute helped define a central scientific challenge publishing a research corpus, demonstrating insights from electronic health record (EHR) and administrative data at each stage of the translational cycle in 593 papers with at least one Farr Institute author affiliation on PubMed. 2. The Farr Institute offered some demonstrations of how these scientific challenges might be solved: it established the first four ISO27001 certified trusted research environments in the UK, and approved more than 1000 research users, published on 102 unique EHR and administrative data sources, although there was no clear evidence of an increase in novel, sustained record linkages. The Farr Institute established open platforms for the EHR phenotyping algorithms and validations (>70 diseases, CALIBER). Sample sizes showed some evidence of increase but remained less than 10% of the UK population in primary care-hospital care linked studies. 3.The Farr Institute created novel interactions among researchers: the co-author publication network expanded from 944 unique co-authors (based on 67 publications in the first 30 months) to 3839 unique co-authors (545 papers in the final 30 months). 4. Training expanded substantially with 3 new masters courses, training >400 people at masters, short-course and leadership level and 48 PhD students. 5. Universities reorganised with 4/5 Centres established 27 new faculty (tenured) positions, 3 new university institutes. 6. Emerging evidence of impacts included: > 3200 citations for the 10 most cited papers and Farr research informed eight practice-changing clinical guidelines and policies relevant to the health of millions of UK citizens.ConclusionThe Farr Institute played a major role in establishing and growing the field of data science for health in the UK, with some initial evidence of benefits for health and healthcare. The Farr Institute has now expanded into Health Data Research (HDR) UK but key challenges remain including, how to network such activities internationally.

Published
2020

49. Prospective risk of Type 2 diabetes in 99 892 Nordic women with polycystic ovary syndrome and 446 055 controls: national cohort study from Denmark, Finland, and Sweden

Author

Glintborg, Dorte, primary, Ollila, Meri-Maija, additional, Møller, Jens-Jakob Kjer, additional, Pesonen, Paula, additional, Persson, Sofia, additional, Elenis, Evangelia, additional, Rubin, Katrine Hass, additional, Gissler, Mika, additional, Andersen, Marianne Skovsager, additional, Sundström-Poromaa, Inger, additional, and Piltonen, Terhi, additional

Published
2024
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