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Rare Disease Patient Registries: EURODIS-NORD-CORD Joint Declaration (#7)

November 18, 2012

       Three international rare disease organizations, representing approximately 60 million people, release a joint declaration on 10 key principles regarding Rare Disease Patient Registries (RDPRs) : 

–   European Organization for Rare Diseases (EURORDIS)

–   National Organization for Rare Diseases (NORD)

–   Canadian Organization for Rare Diseases (CORD). 

The 10 key principles for Rare Disease Patient Registries are as follows :         

1)       A global priority in the field of rare diseases

2)       Have the widest geographic scope possible

3)       Based on a disease or group of diseases instead of therapeutic intervention

4)       Interoperability and harmonization between RDPRs

5)       Minimum set of common data elements used in RDPRs

6)       Data linked with biobank data

7)       Contain data reported by healthcare professionals and by patients

8)       Public-private partnerships are encouraged

9)       Patients and stakeholders equally involved in governance

10)    Used to help build and empower patient communities. 

References 

Orphan Druganaut October 10, 2012 Blog Post titled, “Orphan Drugs And Rare Disease Patient Registries: A Gaucher Disease Registry (#6)”

Orphan Druganaut September 17, 2012 Blog Post titled,”Orphan Drugs And Patient Registries: China’s 1st Rare Disease Registry (#5)”  

Orphan Druganaut September 14, 2012 Blog Post titled, “Orphan Drugs And Rare Disease Patient Registries: EURODIS Policy Fact Sheet (#4)” 

Orphan Druganaut September 4, 2012 Blog Post titled, “Orphan Drugs And Rare Disease Patient Registries: A User’s Guide to Patient Registries (#3)” 

Orphan Druganaut September 3, 2012 Blog Post titled, “Orphan Drugs And Rare Disease Patient Registries: A List of Disease Registries in Europe (#2)” 

Orphan Druganaut August 28, 2012 Blog Post titled, “Orphan Drugs And Rare Disease Patient Registries: A Perspective (#1)” 

Copyright © 2012-2013, Orphan Druganaut Blog.  All rights reserved.

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