𝔖 Bobbio Scriptorium
✦   LIBER   ✦

Patient Registries to Support Research in Rare Diseases – Experience from the Rare Diseases Clinical Research Network

✍ Scribed by Rachel Richesson; Denise Shereff; Rebecca Sutphen; Heather Guillette; Kate Paulus; Peter A. Merkel; Megan Clowse; Jennifer Harris; David Cuthbertson; Renee Leduc; Jeffrey P. Krischer

Book ID
116989626
Publisher
Elsevier Science
Year
2012
Tongue
English
Weight
55 KB
Volume
105
Category
Article
ISSN
1096-7192

No coin nor oath required. For personal study only.

📜 SIMILAR VOLUMES

Promoting the use of standard questions
Promoting the use of standard questions in patient registries and research: A library of questions related to rare diseases
✍ Denise Shereff; James Andrews; Alice Graves; Rachel Richesson 📂 Article 📅 2011 🏛 Wiley (John Wiley & Sons) 🌐 English ⚖ 592 KB

The Patient Registry Item Specifications and Metadata (PRISM) library was developed with funds from the American Recovery and Reinvestment Act (ARRA) with the primary purpose of supporting the use of standardized questions in rare disease patient registries. A patient registry is for a method of col