Sep. 28, 2020
A Cure In Sight, in partnership with the UCSF Ocular Oncology Center and NORD, Launches Landmark Ocular Melanoma Natural History Study
Posted by Valaree DonFrancesco
Cleveland, OH, September 28, 2020—A Cure in Sight and the National Organization for Rare Disorders have launched an innovative study to research ocular melanoma, a disease that can cause blindness, loss of the eye and even death from spread to other organs.
The new study, INSIGHT: A Global Ocular Melanoma Patient Registry, creates a platform for patients around the world to share information about ocular melanoma. Its purpose is to build an international resource to be used by scientists in future research. A Cure in Sight™ (ACIS) and the University of California, San Francisco Beckman Vision Center (UCSF) have spent considerable time working to research the best possible way to capture valuable information that will assist in understanding and treating the rare disease that is ocular melanoma. The INSIGHT Patient Registry will provide the means online to collect, store, and retrieve data for the purpose of providing data for analytics in research studies and epidemiology that may contribute to ocular melanoma.
To help drive awareness and participation, A Cure in Sight will highlight the registry on social media, websites and support groups where ocular melanoma patients participate. During the yearly Eye Believe Patient Survivorship meeting ACIS will hold a workshop to help patients participate in the study and answer their questions. ACIS plans to host webinars, zoom meetings and podcasts to help patients better understand the registry and why their participation is so important.
“The INSIGHT platform provides ocular melanoma patients with an exciting opportunity to contribute data on patient reported outcomes (PROs) and quality of life so that clinicians can better provide holistic care. It also facilitates ocular melanoma research on a larger scale than can be accomplished at single centers,” said Armin Afshar, MD, INSIGHT co-investigator.
INSIGHT is a natural history study that incorporates electronic surveys to collect information about the patient experience in the care pathway, and disease progression. Patients, their caregivers or guardians can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. ACIS may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors and patient advocates.
A Cure in Sight is launching the study in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. A Cure in Sight is a member of NORD and the organizations work together to eliminate the challenges that rare disease patients face.
“Patient-powered registries are changing the landscape of rare disease research,” said Vanessa Boulanger, NORD’s Director of Research Programs. “By building strong partnerships within the community and with leading scientific experts, NORD’s Registry Program is well-positioned to address knowledge gaps and accelerate the development of discoveries that save lives. We are so pleased to welcome A Cure in Sight as a partner in our IAMRARETM Registry Community!”
Ocular melanoma is a rare cancer that occurs in approximately 5-6 in one million people. Patients with ocular melanoma face potential visual handicap, loss of the eye and death from spread to other organs. 98% of ocular melanomas occur as uveal melanomas and 2% are ocular surface (conjunctival) melanomas. There is currently no cure for uveal melanoma once it has metastasized/spread outside of the eye.
For more information, visit insight.iamrare.org.
# # #
About A Cure in Sight
A Cure in Sight is bringing clarity, support and compassion to the darkness of ocular melanoma.
A Cure in Sight (ACIS) supports families who have ocular melanoma and focuses on research for a cure. Through public and private partnerships, we provide clear and reliable education information providing a support community to patients and their caregivers. ACIS educates the public about ocular melanoma, treatment options, clinical trials that may improve their prognosis, making it less overwhelming. ACIS is dedicated to ongoing research. We know we can accelerate viable research projects that otherwise would stall and not be completed, missing opportunities to advance research for effective treatments and possibly a cure.