CURE OM Patient Registry
To date, it has been difficult for the medical community to have access to information that would inform better ocular melanoma prevention, diagnostics, treatments and outcomes. One way to address this challenge is to conduct a natural history study that tracks the lifetime of a disease - ocular melanoma - using a registry.
What is a Patient Registry?
A patient registry is a collection of information about a group of patients who share a condition or experience. Information is submitted by patients in a confidential, online database that collects data and securely stores it to produce research reports on the condition. These reports can then be shared with registry participants and with researchers.
There may be several purposes for a patient registry, including, but not limited to, the following:
- to learn about a disease or condition
- to develop therapies
- to develop research hypotheses
- to improve the quality of health care
Patient registries are transforming research in rare diseases, like ocular melanoma. They are a critical tool for leveraging patient input, engaging patients in research priorities and improving outcomes.
The MRF's CURE OM Patient Registry
The Melanoma Research Foundation's CURE OM initiative is preparing to launch a national registry in 2017! It will capture comprehensive information on genetics, disease characteristics, environment, types of treatments, physical outcomes and quality of life. It will also inform research initiatives focused on policy, patient preferences and standards of care. CURE OM has partnered with the ocular melanoma patient community, academic institutions and healthcare providers to improve clinical care, patient outcomes and quality of life.
The ocular melanoma community has raised funds to employ an experienced patient registry consultant, put together a Patient Registry Working Group comprised of patients, caregivers and ocular melanoma clinicians and researchers, as well as begin the process of developing the CURE OM Patient Registry.
Next steps will include assessing broader community input, finalizing the objectives of the registry, writing the registry protocol, and selecting the host technology for the registry platform. Members of the ocular melanoma community are invited to share input, ideas and feedback on this brief survey below.