“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/
The OMS Registry collects disease-specific natural history data about individuals with rare disorders, with the goal of improving the understanding of rare disorders and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
If you would like access to the NORD Registry Demo data for a research project, please contact our registry administrator at firstname.lastname@example.org . Access to OMS Registry data is contingent upon project approval by the OMS Advisory Board.