INSIGHT Community Registry
We are pleased to announce the launch of the INSIGHT: A Global Ocular Melanoma Patient Registry, a collaborative effort between A Cure In Sight and University of California San Francisco Beckman Eye Center, 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.
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 contact: firstname.lastname@example.org
About A Cure In Sight
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.
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 patient services.
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.