The CLOVES Syndrome Registry collects disease-specific natural history data about individuals with CLOVES syndrome, with the goal of improving the understanding of CLOVES syndrome and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
- Clinical trial participation
We are interested in sharing our data with you! If you would like access to the CLOVES Syndrome Registry data for a research project, please contact our registry administrator at registry@clovessyndrome.org for more information. Access to CLOVES Syndrome Registry data is contingent upon project approval by the CLOVES Syndrome Registry Advisory Board.