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New VISION Registry Report Summarizes Key Ocular Melanoma Patient-Reported Data to Advance Clinical Research and Treatments
The MRF’s CURE Ocular Melanoma (CURE OM) initiative announces impactful data report assessing patient metrics to accelerate scientific understanding of this rare disease
WASHINGTON, DC (September 29, 2022) – Today, the Melanoma Research Foundation’s (MRF) CURE OM initiative, dedicated to increasing awareness, education, support and research funding for ocular melanoma (OM) released its first-ever data report highlighting its Virtual Information System to Improve Outcomes and Networks (VISION) Registry‘s inaugural year. Launched in May 2021, VISION tracks patients from the time of diagnosis through their full experience with ocular melanoma. Patients from around the world can share their experiences with this rare disease to help advance patient care, quality of life and ultimately find a cure for OM. VISION collects patient-reported outcomes such as symptoms, health-related quality of life (HRQOL), perceived health status, experience with the health system and preferences to inform stakeholders on the patient experience. Understanding this holistic experience is pivotal to identify potential causes, improve quality of patient care and enhance clinical research resulting in better therapeutic interventions.
The VISION Registry Data Report provides key takeaways and accomplishments from the registry’s first year and establishes a strong and impressive framework for future patient-centered resources, collaboration and research.
“Having worked for years with dedicated patients, caregivers, physicians and researchers to develop the VISION Registry, the first year of data is now available and we will begin to see transformational change in how we study, treat, and ultimately cure ocular melanoma,” said Dan S. Gombos, MD, FACS, professor and chief, Section of Ophthalmology, MD Anderson Cancer Center, president and board member, ISOO, immediate past president and board member, AAOOP and member of the VISION Registry Steering Committee.
The report offers insight into areas such as socio-demographics, clinical care, patient experience, patient preferences and quality of life. To date, more than 325 OM patients representing 7 countries and 37 states have enrolled in VISION. Of special interest to patients and experts have been the outcomes revealing the patient’s diagnostic journey, biopsy decisions, care priorities and experiences with clinical teams and support services. Particularly illuminating, a clear benefit of VISION is the ability to connect the over 90% of patients who’ve reported interest in participating in eligible studies, with researchers.
“I am incredibly proud to see the leadership and dedication of the ocular melanoma community that brought us to where we are today. As a fifteen-year ocular melanoma survivor, I’m honored that my own OM experience will help to shape the progress of tomorrow and provide hope to patients and their families,” said MRF Board member and OM thriver Mark Weinzierl.
Co-developed by OM patients, caregivers, researchers and clinicians, the VISION Registry advances patient-centered research collaboration across multiple global clinical and academic centers, patient advocacy organizations and governmental as well as non-governmental and industry partners. Future goals include developing a holistic VISION Platform that will enhance intra-community communication and strengthen connections between patients and ongoing research efforts.
The VISION Registry is sponsored by the MRF and receives financial support from Massachusetts General Hospital, Castle Biosciences and TriSalus Life Sciences.
To view additional patient reported data and read OM community testimonials, you can access the 2022 VISION Registry Data Report, here: melanoma.org/VisionDataReport. To engage with or learn more about ocular melanoma, please contact [email protected].
About the MRF’s CURE OM Initiative
Ocular melanoma (OM) develops in the eye and is the most common form of eye cancer in adults and the second most common type of melanoma. Approximately 2,000 Americans are diagnosed with the disease each year. In about half of all OM cases, the disease will spread to other parts of the body. When this occurs, it is almost always fatal. Visit www.cureom.org to learn more about the Melanoma Research Foundation’s OM initiative, CURE OM (Community United for Research and Education of Ocular Melanoma), which was established by an OM patient and caregiver in 2011 to increase awareness, education, support, treatment options and research funding for OM. Find CURE OM on Facebook and Twitter.
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