The MSA registry collects data from patients with rare vascular diseases who are being treated at various expert centres across Europe. Its primary objective is to enhance our understanding of these rare diseases through various research endeavors, such as natural history studies, genotype-phenotype correlations, population comparisons, and cross-country care comparisons.
MSA Registry – RaDiCo vEDS
- Implementation of the program (REDCap): database already available on the RADICO local server and accessible through the web
- The registry address has been exported to the ERDRIdor
- Encoding of the dataset (Orphanet, HPO, OMIM) is done
- Definition of the dataset: minimum dataset and vascular Ehlers-Danlos syndrome (vEDS) specific data elements is completed
- Exporting the registry metadata on the ERDRImdr is completed
List of Studies:
To date, no studies have been conducted utilizing the registry data. However, ongoing efforts are being made to leverage the data for future research purposes.
If you have any questions or inquiries, please follow the instruction below
- For questions regarding your participation or data, please consult your treating physician.
- For inquiries regarding data security, kindly email firstname.lastname@example.org.
For Researchers or Policymakers:
- If you are a researcher or policymaker seeking information related to data utilization, please reach out to email@example.com.
For General Inquiries: