CLOVES Syndrome Registry

The CLOVES Syndrome Community in partnership with the National Organization for Rare Disorders (NORD®) has launched CLOVES Syndrome Registry. The CLOVES Syndrome Registry creates a platform for patients around the world to strengthen their voices and provide critical information about their experiences living with CLOVES Syndrome. This global resource will provide data for researchers to use to advance drug development and treatment options to help improve CLOVES Syndrome patient care.

What is the purpose of the CLOVES Syndrome Registry?

The primary aim of the CLOVES Syndrome Registry is to conduct a prospectively planned and efficient natural history study that will result in a more comprehensive understanding of the disease and its course and pace over time. Other registry objectives include the following:

  • Provide a convenient online platform for participants (or caregivers) to self-report cases of CLOVES Syndrome
  • Develop a communications registry within the CLOVES Syndrome Registry (e.g., to notify participants of research studies and clinical trials).
  • Characterize and describe the CLOVES Syndrome population as a whole, enhancing the understanding of disease prevalence and phenotype as well as the rate of progression of disease characteristics.
  • Assist the CLOVES Syndrome community with the development of recommendations and standards of care.
  • Be a case-finding resource to be used for researchers who seek to study the pathophysiology of CLOVES Syndrome, retrospectively collate intervention outcomes, and design prospective trials of novel treatments.

Frequently Asked Questions about the CLOVES Syndrome Registry