INSIGHT Community Registry – OM (Ocular Melanoma) Registry
We are pleased to announce the re-launch of the INSIGHT ( OM (Ocular Melanoma) Registry): A Global Ocular Melanoma Patient Registry, a collaborative effort between A Cure In Sight and University of California San Francisco Eye Center’s ocular melanoma program, and the National Organization for Rare Disorders (NORD) to study Ocular Melanoma. A Cure In Sight supports research on rare diseases and how they progress over time natural history studies.
Overview of Research Study
The INSIGHT Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic, participant-driven resource that can empower and unite the Ocular Melanoma Community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the registry sponsor, A Cure in Sight will ensure that data privacy and confidentiality are strictly maintained. Participation in the INSIGHT Registry is free and voluntary, and participants may withdraw at any time.
Community Involvement
The INSIGHT Registry is a powerful opportunity for individuals with Ocular Melanoma and their family members to contribute directly to research that will enhance our understanding of Ocular Melanoma, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital. Given the rarity of Ocular Melanoma, every patient experience is a unique and invaluable part of the natural history of Ocular Melanoma.
For further information or to join, please click Join the Registry or contact: insightregistry@acureinsight.org
Not sure where to start with the Insight Registration? Watch the videos for a walk through from registration to completing the surveys.
Thank you to our sponsor and colaborators
At Aura, our mission is to develop a new class of oncology targeted therapies that deliver meaningful therapeutic benefit to a range of cancer indications with high unmet need in which we believe we can establish a new standard of care. We are driven by our passion and commitment to science and the patients battling cancer who are relying on us to pioneer these new therapies.
We are focusing the initial development of our virus-like drug conjugate (VDC) technology platform to treat tumors of high unmet need in ocular and urologic oncology. Belzupacap sarotalocan (bel-sar), our first VDC candidate, is being developed for the first-line treatment of early-stage choroidal melanoma, a rare disease with no drugs approved. Beyond early-stage choroidal melanoma, we are developing bel-sar in additional ocular oncology indications, including choroidal metastasis. Leveraging our VDCs’ broad tumor targeting capabilities, we have also initiated a clinical program in bladder cancer, our first non-ocular solid tumor indication.
About NORD
NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and Ocular Melanoma patient services.
UCSF Ocular Oncology Clinic
The UCSF Ocular Oncology Clinic specializes in diagnosing and treating all types of eye tumors, from the most common to the rare and complex. Many of our patients have benign (noncancerous) ocular tumors, such as a cyst or mole. Others have malignant (cancerous) tumors, most commonly intraocular melanoma and retinoblastoma, or secondary ocular cancer, which is cancer that started elsewhere in the body and has spread to the eye. The tools and expertise required for diagnosing and treating benign and malignant eye tumors are often the same.
Dr. Armin Afshar is an ophthalmologist who specializes in treating eye tumors and disorders of the retina and vitreous (the gel-like substance at the back of the eye). He has special expertise in managing ocular surface tumors of the conjunctiva and cornea, as well as intraocular tumors involving the iris, ciliary body, choroid, retina, vitreous or optic nerve.