Exploring African American community perspectives about genomic medicine research: A literature review

Autor: Rachele M Hendricks-Sturrup, Lauren M Edgar, Tracey Johnson-Glover, Christine Y Lu

Publikováno v: SAGE Open Medicine, Vol 8 (2020)

Genomic medicine research is an important topic in the African American health care community. African American nurses and advance practice nursing professionals are poised to encourage and educate themselves and their communities about the importanc

Externí odkaz: https://doaj.org/article/36cdf1d0221b462bbe75c8fd59f567a7

Leveraging stories of cardiac amyloidosis patients of African ancestry or descent to support patient-derived data elements for efficient diagnosis and treatment

Autor: Rachele M. Hendricks-Sturrup, Lauren M. Edgar, Christine Y. Lu

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

Externí odkaz: https://doaj.org/article/b9f69b3dda1d4ad481c4a19cb1c114ae

Integrating Patient-Reported Outcomes Into Clinical Genetic Testing for Familial Hypercholesterolemia

Autor: Rachele M. Hendricks-Sturrup, Robert Block, Christine Y. Lu

Publikováno v: Journal of Patient-Centered Research and Reviews, Vol 8, Iss 4, Pp 336-339 (2021)

Patient-reported outcomes (PROs) and PRO measures (PROMs) are often used to help clinicians and researchers understand patients’ personal concerns, feelings, experiences, and perspectives following the implementation of an intervention. Notably, PR

Externí odkaz: https://doaj.org/article/ded3938e8391437c919219b137d33bd9

African American Nurses' Perspectives on Genomic Medicine Research

Autor: Rachele M. Hendricks-Sturrup, Christine Y. Lu, Tracey Johnson-Glover, Lauren M. Edgar

Publikováno v: AMA Journal of Ethics. 23:E240-251

Background There is a lack of African American (AA) community engagement in genomic medicine research. Recent popular interest in the experience of AAs, such as that of Henrietta Lacks, has perhaps prompted interest in research on how AA nurses can p

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::be9bca570958e1f31168cc961a9f6548
https://doi.org/10.1001/amajethics.2021.240

GA4GH: International policies and standards for data sharing across genomic research and healthcare

Autor: Amber L. Johns, Ian Fore, Juha Törnroos, Melissa Haendel, Bimal Chaudhari, J. Patrick Woolley, Brian Walsh, Susan Fairley, Jonathan A. Tedds, Jessica Vamathevan, Martin Kuba, Clara L. Gaff, Ksenia Zaytseva, Sabine Oesterle, David Bujold, Sarion R. Bowers, Alexander Kanitz, Jordi Rambla, Anthony J. Brookes, Alice L. Mann, Gregory A. Rushton, Paul Flicek, Seik-Soon Khor, Khalid A. Fakhro, Aina Jene, Miro Cupak, Moran N. Cabili, Emilio Palumbo, Nathan C. Sheffield, Vivian Ota Wang, James K. Bonfield, Julius O.B. Jacobsen, Michael M. Hoffman, Neerjah Skantharajah, Ewan Birney, Rasko Leinonen, Anna Middleton, Anneke M. Lucassen, Ania Niewielska, Angela Page, Jeffrey Niu, Alastair A. Thomson, Elena M. Ghanaim, Albert V. Smith, Megan Doerr, Lena I. Dolman, Arcadi Navarro, Ada Hamosh, Sean Upchurch, Michael Baudis, Jerome Kelleher, Marc Fiume, Mikael Linden, Roderic Guigó, Orion J. Buske, Tristan H. Nelson, Kyle Ellrott, Lauren A. Fromont, Alex H. Wagner, Alexander Senf, Tommi Nyrönen, Michele Mattioni, David Haussler, Alejandro Metke-Jimenez, Francis Jeanson, Mélanie Courtot, David Hansen, Matthew H. Brush, Helen Parkinson, Peter Goodhand, Lindsay Smith, Jonathan Fuerth, Stephanie Li, Tim Beck, Debyani Chakravarty, Kristina Kekesi-Lafrance, Giselle Kerry, James A. Eddy, Torsten Schwede, Jaime M. Guidry Auvil, Xianglin Liu, Soichi Ogishima, Fiona Cunningham, Oliver Hofmann, Dean Hartley, Amy Nisselle, Katsushi Tokunaga, Alfonso Valencia, Hidewaki Nakagawa, Kurt W. Rodarmer, Lawrence J. Babb, Heidi J. Sofia, David Glazer, Angel Pizarro, Ammar Husami, Gil Alterovitz, Serena Scollen, J. Michael Cherry, Helen V. Firth, Zornitza Stark, Monica C. Munoz-Torres, Daniel L Cameron, Robert R. Freimuth, Manuel Rueda, Stephanie O.M. Dyke, Makoto Suematsu, Christina K. Yung, Rosalyn S. Ryan, Chisato Yamasaki, Michael S. Fitzsimons, Amanda B. Spurdle, Renee A. Rider, Karen Eilbeck, Ashley E. Hobb, Roman Valls Guimera, Calvin W. L. Ho, Robert L. Davies, Maxmillian P. Barkley, Malachi Griffith, Rishi Nag, Javier Lopez, Jacob Shujui Hsu, Isuru Udara Liyanage, Petr Holub, Dylan Spalding, Reece K. Hart, Barbara J. Wold, Fruzsina Molnár-Gábor, Sarah E. Hunt, Augusto Rendon, Danielle Denisko, Dipayan Gupta, Obi L. Griffith, Robert J. Carroll, Patrick Tan, Craig Voisin, Saumya Shekhar Jamuar, Mallory A. Freeberg, Michael Brudno, Andreas Prlic, Kenjiro Kosaki, Shu Hui Chen, Edward S. Dove, Tony Burdett, Anthony A. Philippakis, Richard Milne, Bartha Maria Knoppers, Kathryn North, David Torrents, Eva C. Winkler, Marc S. Williams, Melissa A. Konopko, Rachele M. Hendricks-Sturrup, Brian O'Connor, Grant M. Wood, Robert L. Grossman, Timothy L. Tickle, Michael F. Lin, Laura Lyman Rodriguez, Weiniu Gan, Laura A.D. Paglione, Justina Chung, Thomas M. Keane, Susan E. Wallace, Lyndon J. Zass, Heidi L. Rehm, Kazuto Kato, Alexander Bernier, Nicola Mulder, Jamal Nasir, Yann Joly, Junjun Zhang, Adrian Thorogood, Lincoln Stein, Guillaume Bourque, L. Jonathan Dursi, Tudor Groza, Jean-Pierre Hubaux, Coby Viner, Helen Schuilenburg, Sergi Beltran, Michael J.S. Beauvais, Hayley L. Clissold, Elizabeth L. Janes, Jacques S. Beckmann, Michael Lukowski, Melissa S. Cline, John F. Marshall, Alan F. Rubin, Tiffany Boughtwood, Peter N. Robinson, Robert C. Green, Robert Cook-Deegan, Esmeralda Casas-Silva, Jeremy Adams, Steven J.M. Jones, Gary I. Saunders, Danya F. Vears, Jonathan Lawson, Andrew D. Yates, David Bernick, Susheel Varma

Publikováno v: Cell Genonics
Rehm, H L, Page, A J H, Smith, L, Adams, J B, Alterovitz, G, Babb, L J, Barkley, M P, Baudis, M, Beauvais, M J S, Beck, T, Beckmann, J S, Beltran, S, Bernick, D, Bernier, A, Bonfield, J K, Boughtwood, T F, Bourque, G, Bowers, S R, Brookes, A J, Brudno, M, Brush, M H, Bujold, D, Burdett, T, Buske, O J, Cabili, M N, Cameron, D L, Carroll, R J, Casas-Silva, E, Chakravarty, D, Chaudhari, B P, Chen, S H, Cherry, J M, Chung, J, Cline, M, Clissold, H L, Cook-Deegan, R M, Courtot, M, Cunningham, F, Cupak, M, Davies, R M, Denisko, D, Doerr, M J, Dolman, L I, Dove, E S, Dursi, L J, Dyke, S O M, Eddy, J A, Eilbeck, K, Ellrott, K P, Fairley, S, Fakhro, K A, Firth, H V, Fitzsimons, M S, Fiume, M, Flicek, P, Fore, I M, Freeberg, M A, Freimuth, R R, Fromont, L A, Fuerth, J, Gaff, C L, Gan, W, Ghanaim, E M, Glazer, D, Green, R C, Griffith, M, Griffith, O L, Grossman, R L, Groza, T, Guidry Auvil, J M, Guigó, R, Gupta, D, Haendel, M A, Hamosh, A, Hansen, D P, Hart, R K, Hartley, D M, Haussler, D, Hendricks-Sturrup, R M, Ho, C W L, Hobb, A E, Hoffmann, M M, Hoffman, O M, Holub, P, Hsu, J S, Hubaux, J-P, Hunt, S E, Husami, A, Jacobsen, J O, Jamuar, S S, Janes, E L, Jeanson, F, Jené, A, Johns, A L, Joly, Y, Jones, S J M, Kanitz, A, Kato, K, Keane, T M, Kekesi-Lafrance, K, Kelleher, J, Kerry, G, Khor, S-S, Knoppers, B M, Konopko, M A, Kosaki, K, Kuba, M, Lawson, J, Leinonen, R, Li, S, Lin, M F, Linden, M, Liu, X, Liyanage, I U, Lopez, J, Lucassen, A M, Lukowski, M, Mann, A L, Marshall, J, Mattioni, M, Metke-Jimenez, A, Middleton, A, Milne, R J, Molnár-Gábor, F, Mulder, N, Munoz-Torres, M C, Nag, R, Nakagawa, H, Nasir, J, Navarro, A, Nelson, T H, Niewielska, A, Nisselle, A, Niu, J, Nyrönen, T H, O'Connor, B D, Oesterle, S, Ogishima, S, Wang, V O, Paglione, L A D, Palumbo, E, Parkinson, H E, Philippakis, A A, Pizarro, A D, Prlic, A, Rambla, J, Rendon, A, Rider, R A, Robinson, P N, Rodarmer, K W, Rodriguez, L L, Rubin, A F, Rueda, M, Rushton, G A, Ryan, R S, Saunders, G I, Schuilenburg, H, Schwede, T, Scollen, S, Senf, A, Sheffield, N C, Skantharajah, N, Smith, A V, Sofia, H J, Spalding, D, Spurdle, A B, Stark, Z, Stein, L D, Suematsu, M, Tan, P, Tedds, J A, Thomson, A A, Thorogood, A, Tickle, T L, Tokunaga, K, Törnroos, J, Torrents, D, Upchurch, S, Valencia, A, Guimera, R V, Varmathevan, J, Varma, S, Vears, D F, Viner, C, Voisin, C, Wagner, A H, Wallace, S E, Walsh, B P, Williams, M S, Winkler, E C, Wold, B J, Wood, G M, Woolley, J P, Yamasaki, C, Yates, A D, Yung, C K, Zass, L J, Zaytseva, K, Zhang, J, Goodhand, P, North, K & Birney, E 2021, ' GA4GH : International policies and standards for data sharing across genomic research and healthcare ', Cell Genomics, vol. 1, no. 2, 100029 . https://doi.org/10.1016/j.xgen.2021.100029
Cell genomics
Digital.CSIC. Repositorio Institucional del CSIC
instname
Cell genomics, vol. 1, no. 2, pp. 100029

The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of geno

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c734eb108aca696729e07ad1bb534379