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

Eitemau Tebyg

• Informed consent process for patient participation in rare disease registries linked to biorepositories Contemporary Clinical Trials
  gan: Rubinstein, Yaffa R., et al.
  Cyhoeddwyd: (2011)
• Informed consent and patient registry for the rare disease community: Editorial
  gan: Grady, Christine, et al.
  Cyhoeddwyd: (2011)
• [RD] PRISM Library: Patient Registry Item Specifications and Metadata for Rare Diseases
  gan: Richesson, Rachel, et al.
  Cyhoeddwyd: (2010)
• Biospecimens and Biorepositories: From Afterthought to Science
  gan: Vaught, Jimmie B., et al.
  Cyhoeddwyd: (2012)
• The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
  gan: Gainotti, Sabina, et al.
  Cyhoeddwyd: (2018)