An online survey of burden of illness in families with mucopolysaccharidosis type II children in the United States

بواسطة Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rangel-Miller, Vanessa
الحاوية / القاعدة Mol Genet Metab Rep (2019)

An online survey on burden of illness among families with post-stem cell transplant mucopolysaccharidosis type I children in the United States

بواسطة Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rascati, Karen, Rangel-Miller, Vanessa
الحاوية / القاعدة Orphanet J Rare Dis (2019)

Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study

بواسطة Seidlin, Mindell, Holzman, Robert, Knight, Pamela, Korf, Bruce, Rangel Miller, Vanessa, Viskochil, David, Bakker, Annette
الحاوية / القاعدة PLoS One (2017)

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

بواسطة 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
الحاوية / القاعدة Contemp Clin Trials (2011)

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

بواسطة 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.
منشور في 2014

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

بواسطة 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
منشور في 2010