Methodology of clinical research in rare diseases: Development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates

✍ Scribed by de Blieck, Elisabeth A.; Augustine, Erika F.; Marshall, Frederick J.; Adams, Heather; Cialone, Jennifer; Dure, Leon; Kwon, Jennifer M.; Newhouse, Nicole; Rose, Katherine; Rothberg, Paul G.; Vierhile, Amy; Mink, Jonathan W.

• Book ID: 122877836
• Publisher: Elsevier Science
• Year: 2013
• Tongue: English
• Weight: 182 KB
• Volume: 35
• Category: Article
• ISSN: 1551-7144
• DOI: 10.1016/j.cct.2013.04.004