Zobrazeno 1 - 3 of 3 pro vyhledávání: '"Geraldine B. Pollen"'
1
Informed consent process for patient participation in rare disease registries linked to biorepositories
Autor: Sara Hull Chandros, Yaffa R. Rubinstein, Richard T. Moxley, Patricia A. Marshall, Julie Kaneshiro, Barbara I. Karp, Jack Schwartz, Geraldine B. Pollen, Vanessa Rangel Miller, Nicole C. Lockhart, Stephen C. Groft
Publikováno v: Contemporary Clinical Trials. 33:5-11
a Office of Rare Diseases Research, National Institutes of Health, Bethesda, MD, United States b Office of the Clinical Director, National Human Genome Research Institute, Department of Bioethics, Clinical Center, National Institutes of Health, Bethe
Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::1c18166f9584b716e53ffebf5676cadc
https://doi.org/10.1016/j.cct.2011.10.004
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2
Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB)
Autor: Yaffa R. Rubinstein, Vanessa Rangel Miller, Elaine Collier, Nicole C. Lockhart, Stephen C. Groft, Ronald J. Bartek, Ronald A. Christensen, Kyle Brown, Kate R. McCurdy, Sara Chandros Hull, Geraldine B. Pollen, Christopher B. Forrest, John H. Ferguson, Jim Vaught, Helen M. Moore, Jennifer Farmer, Rachel L. Richesson, Amy Farber
Publikováno v: Contemporary Clinical Trials. 31:394-404
A movement to create a global patient registry for as many as 7,000 rare diseases was launched at a workshop, "Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data." http://rarediseases.
Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::05a5149745d98969358970af491e2f8a
https://doi.org/10.1016/j.cct.2010.06.007
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