Contemporary Clinical Trials - September 2010 (Vol. 31, Issue 5, Pages 394-404, DOI: 10.1016/j.cct.2010.06.007)
Yaffa R. Rubinsteina, Stephen C. Grofta23, Ronald Bartekb, Kyle Brownc, Ronald A. Christensend, Elaine Colliere, Amy Farberf, Jennifer Farmerb, John H. Fergusona, Christopher B. Forrestgh, Nicole C. Lockharti, Kate R. McCurdyj, Helen Moorei, Geraldine B. Pollena, Rachel Richessonk, Vanessa Rangel Millerl, Sara Hullm, Jim Vaughti
a Office of Rare Diseases Research National Institutes of Health, Bethesda, MD, United States
b Friedreich's Ataxia Research Alliance (FARA), Springfield, VA, United States
c Innolyst, Inc, San Mateo, CA, United States
d REGISTRAT-MAPI, Scottsdale, AZ, United States
e National Center for Research Resources, National Institutes of Health, Bethesda, MD, United States
f LAM Treatment Alliance, Cambridge, MA, United States
g Children's Hospital of Philadelphia, Philadelphia, PA, United States
h Department of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, PA, United States
i Office of Biorepositories and Biospecimen Research, National Cancer Institute, National Institutes of Health, Bethesda, MD, United States
j Barth Syndrome Foundation, Inc, Larchmont, NY, United States
k Department of Pediatrics, Division of Bioinformatics and Biostatistics, University of South Florida College of Medicine, Tampa, FL, United States
l Department of Human Genetics, Emory University, Atlanta, GA, United States
m Office of the Clinical Director, National Human Genome Research Institute, Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD, United States
☆ Authors listed 3rd to18th alphabetically contributed equally.
1 Director of Patient Resources for Clinical and Translational Research, Office of Rare Dieseases Reseach.
2 Director of the Office of Rare Diseases Research, National Institutes of Health, 6100 Executive Boulevard, Room 3A07, MSC-751, Bethesda, MD 20892, United States. Tel.: +1 301 435 6041.
3 Co-first author.
Keywords: FARA, Rare diseases, Patient registry, Disease registry, Patient advocacy, Biospecimen, Biospecimen repositories, Clinical data, Electronic health record
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