Data sharing in neurodegenerative disease research: challenges and learnings from the innovative medicines initiative public-private partnership model

Autor: Angela Bradshaw, Nigel Hughes, David Vallez-Garcia, Davit Chokoshvili, Andrew Owens, Clint Hansen, Kirsten Emmert, Walter Maetzler, Lewis Killin, Rodrigo Barnes, Anthony J. Brookes, Pieter Jelle Visser, Martin Hofmann-Apitius, Carlos Diaz, Lennert Steukers

Publikováno v: Frontiers in Neurology, Vol 14 (2023)

Efficient data sharing is hampered by an array of organizational, ethical, behavioral, and technical challenges, slowing research progress and reducing the utility of data generated by clinical research studies on neurodegenerative diseases. There is

Externí odkaz: https://doaj.org/article/e12f29d75f1f4dc4ad0dcd9b1a9f2391

Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries

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

Publikováno v: Calvert, C, Brockway, M, Zoega, H, Miller, J E, Been, J V, Amegah, A K, Racine-Poon, A, Oskoui, S E, Abok, I I, Aghaeepour, N, Akwaowo, C D, Alshaikh, B N, Ayede, A I, Bacchini, F, Barekatain, B, Barnes, R, Bebak, K, Berard, A, Bhutta, Z A, Brook, J R, Bryan, L R, Cajachagua-Torres, K N, Campbell-Yeo, M, Chu, D-T, Connor, K L, Cornette, L, Cortés, S, Daly, M, Debauche, C, Dedeke, I O F, Einarsdóttir, K, Engjom, H, Estrada-Gutierrez, G, Fantasia, I, Fiorentino, N M, Franklin, M, Fraser, A, Gachuno, O W, Gallo, L A, Gissler, M, Håberg, S E, Habibelahi, A, Häggström, J, Hookham, L, Hui, L, Huicho, L, Hunter, K J, Huq, S, Kc, A, Kadambari, S, Kelishadi, R, Khalili, N, Kippen, J, Le Doare, K, Llorca, J, Magee, L A, Magnus, M C, Man, K K C, Mburugu, P M, Mediratta, R P, Morris, A D, Muhajarine, N, Mulholland, R H, Bonnard, L N, Nakibuuka, V, Nassar, N, Nyadanu, S D, Oakley, L, Oladokun, A, Olayemi, O O, Olutekunbi, O A, Oluwafemi, R O, Ogunkunle, T O, Orton, C, Örtqvist, A K, Ouma, J, Oyapero, O, Palmer, K R, Pedersen, L H, Pereira, G, Pereyra, I, Philip, R K, Pruski, D, Przybylski, M, Quezada-Pinedo, H G, Regan, A K, Rhoda, N R, Rihs, T A, Riley, T, Rocha, T A H, Rolnik, D L, Saner, C, Schneuer, F J, Souter, V L, Stephansson, O, Sun, S, Swift, E M, Szabó, M, Temmerman, M, Tooke, L, Urquia, M L, von Dadelszen, P, Wellenius, G A, Whitehead, C, Wong, I C K, Wood, R, Wróblewska-Seniuk, K, Yeboah-Antwi, K, Yilgwan, C S, Zawiejska, A, Sheikh, A, Rodriguez, N, Burgner, D, Stock, S J & Azad, M B 2023, ' Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries ', Nature Human Behaviour . https://doi.org/10.1038/s41562-023-01522-y
Calvert, C, Brockway, M, Zoega, H, Miller, J E, Been, J V, Amegah, A K, Racine-Poon, A, Oskoui, S E, Abok, I I, Aghaeepour, N, Akwaowo, C D, Alshaikh, B N, Ayede, A I, Bacchini, F, Barekatain, B, Barnes, R, Bebak, K, Berard, A, Bhutta, Z A, Brook, J R, Bryan, L R, Cajachagua-Torres, K N, Campbell-Yeo, M, Chu, D T, Connor, K L, Cornette, L, Cortés, S, Daly, M, Debauche, C, Dedeke, I O F, Einarsdóttir, K, Engjom, H, Estrada-Gutierrez, G, Fantasia, I, Fiorentino, N M, Franklin, M, Fraser, A, Gachuno, O W, Gallo, L A, Gissler, M, Håberg, S E, Habibelahi, A, Häggström, J, Hookham, L, Hui, L, Huicho, L, Hunter, K J, Huq, S, Kc, A, Kadambari, S, Kelishadi, R, Khalili, N, Kippen, J, Le Doare, K, Llorca, J, Magee, L A, Magnus, M C, Man, K K C, Mburugu, P M, Mediratta, R P, Morris, A D, Muhajarine, N, Mulholland, R H, Bonnard, L N, Nakibuuka, V, Nassar, N, Nyadanu, S D, Oakley, L, Oladokun, A, Olayemi, O O, Olutekunbi, O A, Oluwafemi, R O, Ogunkunle, T O, Orton, C, Örtqvist, A K, Ouma, J, Oyapero, O, Palmer, K R, Pedersen, L H, Pereira, G, Pereyra, I, Philip, R K, Pruski, D, Przybylski, M, Quezada-Pinedo, H G, Regan, A K, Rhoda, N R, Rihs, T A, Riley, T, Rocha, T A H, Rolnik, D L, Saner, C, Schneuer, F J, Souter, V L, Stephansson, O, Sun, S, Swift, E M, Szabó, M, Temmerman, M, Tooke, L, Urquia, M L, von Dadelszen, P, Wellenius, G A, Whitehead, C, Wong, I C K, Wood, R, Wróblewska-Seniuk, K, Yeboah-Antwi, K, Yilgwan, C S, Zawiejska, A, Sheikh, A, Rodriguez, N, Burgner, D, Stock, S J & Azad, M B 2023, ' Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries ', Nature Human Behaviour, vol. 7, no. 4, pp. 529-544 . https://doi.org/10.1038/s41562-023-01522-y
Nature Human Behaviour, 7(4), 529-544. Nature Publishing Group
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; ... (2023). Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries. Nature human behaviour, 7(4), pp. 529-544. Springer Nature 10.1038/s41562-023-01522-y
iPOP Study Team 2023, ' Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries ', Nature Human Behaviour . https://doi.org/10.1038/s41562-023-01522-y
Nature Human Behaviour
Calvert, C, Brockway, M, Zoega, H, Miller, J E, Been, J V, Amegah, A K, Eradat Oskoui, S, Hunter, K, Mulholland, R, Wood, R, Sheikh, A & Stock, S J 2023, ' Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries ', Nature Human Behaviour, vol. 7, no. 4, pp. 529-544 . https://doi.org/10.1038/s41562-023-01522-y

Preterm birth (PTB) is the leading cause of infant mortality worldwide. Changes in PTB rates, ranging from −90% to +30%, were reported in many countries following early COVID-19 pandemic response measures (‘lockdowns’). It is unclear whether th

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a87776f22c6c73a6f30ce6fa4813fd0d
https://pure.au.dk/portal/da/publications/changes-in-preterm-birth-and-stillbirth-during-covid19-lockdowns-in-26-countries(a3451e24-eb9c-4dc0-93c3-13267f037c4a).html

Virtual Cohorts and Synthetic Data in Dementia: An Illustration of Their Potential to Advance Research

Autor: Graciela Muniz-Terrera, Ofer Mendelevitch, Rodrigo Barnes, Michael D. Lesh

Publikováno v: Frontiers in Artificial Intelligence
Frontiers in Artificial Intelligence, Vol 4 (2021)
Muniz-terrera, G, Mendelevitch, O, Barnes, R & Lesh, M D 2021, ' Virtual Cohorts and Synthetic Data in Dementia: An Illustration of Their Potential to Advance Research ', Frontiers in Artificial Intelligence, vol. 4 . https://doi.org/10.3389/frai.2021.613956

When attempting to answer questions of interest, scientists often encounter hurdles that may stem from limited access to existing adequate datasets as a consequence of poor data sharing practices, constraining administrative practices. Further, when

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7f514c4718a58e5e9a99f6909b47420b
https://pubmed.ncbi.nlm.nih.gov/34079930