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; Adams, Heather; Augustine, Erika; Cialone, Jennifer; Dure, Leon; Kwon, Jennifer; Marshall, Frederick; Newhouse, Nicole; Rose, Katherine; Rothberg, Paul; Vierhile, Amy; Mink, Jonathan

• Book ID: 122472408
• Publisher: Elsevier Science
• Year: 2013
• Tongue: English
• Weight: 78 KB
• Volume: 108
• Category: Article
• ISSN: 1096-7192
• DOI: 10.1016/j.ymgme.2012.11.063