Research study is open to participants worldwide to advance understanding and treatments for rare disease causing CLOVES Syndrome.
December 1, 2023 — Today, CLOVES Syndrome Community and the National Organization for Rare Disorders (NORD) launched a study with global reach to research CLOVES Syndrome, which causes mobility challenges, pain, vascular anomalies and progressive overgrowth. CLOVES is a lifelong condition that currently has no cure.
The new study, CLOVES Syndrome Registry, creates a platform for patients around the world to share information about CLOVES Syndrome. Its purpose is to build an international resource to be used by scientists in future research. CLOVES Syndrome is an overgrowth syndrome with complex vascular anomalies. CLOVES stands for Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies. The syndrome shows no inheritance among families of affected patients.
CLOVES Syndrome is rare and very variable; ranging from mild to severe. The common features in most patients allow for proper diagnosis and distinction from other syndromes. The most consistent features of the syndrome are: fatty truncal mass, vascular anomalies, abnormal extremities, skin abnormalities, and other abnormalities including small or absent kidney, abnormal patella (knee cap), knee and hip joints.
“The CLOVES Syndrome Registry will provide a complete picture of each patient’s experience with CLOVES Syndrome,” said CLOVES Syndrome Community. “We are launching this initiative to help fill in the missing information researchers and medical experts need to advance research and one day, find a cure.”
To help drive awareness and participation, CLOVES Syndrome Community will be running a social media recruitment campaign.
“The success of the registry is dependent upon community participation. Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said CLOVES Syndrome Community.
CLOVES Syndrome Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is confidential and stored securely in the IAMRARE online portal. CLOVES Syndrome Community may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board which includes scientists, doctors, and patient advocates.
CLOVES Syndrome Community is launching the study in collaboration with NORD, an independent nonprofit that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. CLOVES Syndrome Community is a member of NORD and the two organizations work together to eliminate the challenges that rare disease patients face.
“NORD’s motto is ‘Alone, we are rare. Together, we are strong.’ The launch of this new registry is a perfect embodiment of our motto and the collaboration and community engagement needed to drive forward rare disease research and outcomes for the rare community. We look forward to furthering our partnership with the CLOVES Syndrome Community to best support research and innovation for CLOVES Syndrome Community,” said Aliza Fink, Director of Research Programs, NORD.
For more information, visit the CLOVES Syndrome Registry or www.clovesyndrome.org.
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About CLOVES Syndrome Community (CSC)
CLOVES Syndrome Community supports, educates, empowers, and improves the lives of those affected by CLOVES Syndrome. CSC’s vision is an improved quality of life for people with CLOVES Syndrome. They will reach this vision by achieving the following goals; provide information and resources to educate others about CLOVES Syndrome, foster and promote a supportive community, build and sustain a broad base of funding sources to support our mission and goals, utilize incoming funds to provide financial assistance to those impacted by CLOVES Syndrome, and participate in and promote CLOVES Syndrome research to assist in a complete understanding of the disease.
About National Organization for Rare Disorders, Inc. (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
Media Contact:
Noreen Fairley, [email protected] , CLOVES Syndrome Community
NORD Marketing [email protected], NORD