Informed consent process for patient participation in rare disease registries linked to biorepositories Contemporary Clinical Trials

Por Rubinstein, Yaffa R., Groft, Stephen C., Chandros, Sara Hull, Kaneshiro, Julie, Karp, Barbara, Lockhart, Nicole C., Marshall, Patricia A., Moxley, Richard T., Pollen, Geraldine B., Rangel Miller, Vanessa, Schwartz, Jack
Publicado no Contemp Clin Trials (2011)

Online Self-Report Data for Duchenne Muscular Dystrophy Confirms Natural History and Can Be Used to Assess for Therapeutic Benefits

Por Wang, Richard T., Silverstein Fadlon, Cheri A., Ulm, J. Wes, Jankovic, Ivana, Eskin, Ascia, Lu, Ake, Rangel Miller, Vanessa, Cantor, Rita M., Li, Ning, Elashoff, Robert, Martin, Anne S., Peay, Holly L., Halnon, Nancy, Nelson, Stanley F.
Publicado em 2014

Creating a Global Rare Disease Patient Registry linked to a Rare Diseases Biorepository Database: Rare Disease - HUB (RD – HUB)

Por Rubinstein, Yaffa R, Groft, Stephen C, Bartek, Ronald, Brown, 'Kyle, Christensen, Ronald A, Collier, Elaine, Farber, Amy, Farmer, Jennifer, Ferguson, John H, Forrest, Christopher B, Lockhart, Nicole C, McCurdy, Kate R, Moore, Helen, Pollen, Geraldine B, Richesson, Rachel, Rangel, Miller Vanessa, Hull, Sara, Vaught, Jim
Publicado em 2010