The HTAD 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.
- The programme has been implemented (CleanWeb) and is in production with the minimum dataset and the HTAD specific disease elements defined
- HTAD HCP APHP Hopital Bichat, is already entering patient data
- Accounts have been created for other HTAD centers in Europe and now they are awaiting the signature of legal documentation from these centers in order to start entering patient data
- The database has been declared on ERDRIdor (European Directory of Registries)
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 email@example.com.
For Researchers or Policymakers:
- If you are a researcher or policymaker seeking information related to data utilization, please reach out to firstname.lastname@example.org.
For General Inquiries:
All elements collected in this registry can be found here.