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MRF’s CURE OM Initiative Welcomes Jacqueline Kraska
One of the central challenges with studying a rare disease is that there is little information available. Ocular melanoma (OM) is a rare disease, with only about 2,000 individuals diagnosed each year. To-date it has been difficult for the medical community to have access to information that would inform better prevention, diagnostics, treatments and outcomes. One formidable way to address these challenges is to implement a longitudinal registry, or “natural history study,” that tracks the disease from the moment of diagnosis through its lifetime.
Patient-reported registries are transforming research in rare diseases. A patient registry is an online database that collects and stores information and allows for analysis and reporting on a specified disease. Unlike traditional research that utilizes databases in academic centers and healthcare settings for conducting rare disease studies, patient-reported registries are often sponsored by advocacy organizations that work closely with both the research and patient communities. Patient-reported registries are a critical tool for leveraging patient input and engaging patients in research priorities and improving outcomes.
The Melanoma Research Foundation’s (MRF) CURE OM initiative is sponsoring a national patient-reported registry to support research advancement in ocular melanoma. The OM patient-registry will capture comprehensive disease data including: genetics and disease characteristics, environment, types of treatments, physical outcomes, and the patient’s quality of life. It will also inform patient-centered research initiatives focused on policy, patient preferences and standards of care. And in addition to collecting invaluable disease data the registry will support the collaboration of patients, caregivers, clinicians, researchers, and the pharmaceutical industry to find a cure together.
CURE OM is in the process of holding discussions with other registry initiatives in the United States and abroad to ensure the most comprehensive and collaborative approach. Soon we will be reaching out to the OM patient community for their input. The registry initiative will be long-term and evolve over time, the OM community will be continually consulted and informed of results and developments.
I am thrilled to be working with CURE OM in the role of Advisor on Patient Centered Outcomes Research Initiatives. In my role, I will help guide the registry development and implementation. Currently, we are in the process of assessing the logistics of developing, sponsoring and managing the registry; soliciting patient and community input; and creating a working group to guide the development and implementation of the registry. I look forward to working with everyone to develop a successful and meaningful national OM patient registry.
Written by Jacqueline Kraska,
Written by Jacqueline Kraska,CURE OM Advisor on Patient Centered Outcomes Research Initiatives