Joint Declaration of 10 Key Principles for Rare Disease Patient Registries
1. Patient Registries should be recognized as a global priority in the field of Rare Diseases
2. Rare Disease Patient Registries should encompass the widest geographic scope possible.
3. Rare Disease Patient Registries should be centered on a disease or group of diseases rather than a therapeutic intervention
4. Interoperability and harmonization between Rare Disease Patient Registries should be consistently pursued.
5. A minimum set of Common Data Elements should be consistently used in all Rare Disease Patient Registries.
6. Rare Disease Patient Registries data should be linked with corresponding biobank data.
7. Rare Disease Patient Registries should include data directly reported by patients along with data reported by healthcare professionals.8. Public-Private Partnerships should be encouraged to ensure sustainability of Rare Disease Patient Registries.9. Patients should be equally involved with other stakeholders in thegovernance of Rare Disease Patient Registries.10. Rare Disease Patient Registries should serve as key instruments for building and empowering patient communities.
