CURE OM Patient Registry

For the most recent information about this project, please view the CURE OM Patient Registry Update. Additionally, members of the Patient Registry Steering Committee gave a status update presentation at the 7th Annual Eyes on a Cure: Patient & Caregiver Symposium on April 20-22, 2018. A video recording of the complete presentation will be available shortly.

Background

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 in the process of launching a national registry! 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. 

So Far...

In the past year, CURE OM has achieved several milestones toward developing a patient-powered patient-reported registry. After working closely with the ocular melanoma community to raise the initial funds to initiate the project, CURE OM hired Ms. Jacqueline Kraska to consult on patient-centered research initiatives. In her role, Ms. Kraska oversees the development of the CURE OM Patient Registry and brings fifteen years of experience in clinical research and patient reported registries

CURE OM convened a Patient Registry Steering Committee comprised of patients, caregivers and ocular melanoma clinicians and researchers who meet both in person and via regular conference calls to support the development of the CURE OM Patient Registry. Along with guidance from this committee, CURE OM incorporated input from outside stakeholders in the OM patient and caregiver community through an international online survey. Additionally, CURE OM has thoroughly assessed different registry models and service providers to determine the best platform to host the CURE OM Patient Registry and insure its objectives are met. The aims, objectives and desired outcomes have been finalized and the study protocol outlining methodical structures and processes is currently in development.

Throughout the project, the CURE OM registry team is committed to a plan that will inform, educate and engage the patient community. This includes providing updates at the CURE OM Patient and Caregiver Symposium and the production of an online webinar series to provide project updates and offer the opportunity to share feedback and questions with the CURE OM team. 

Next Steps

Next steps include securing multi-year registry funding, contracting with the chosen registry service provider and building the technical components of the registry. This will entail further engagement with collaborators in both the US and abroad, as well as finalizing the protocol and gaining regulatory approval for the registry content to ensure patient safety and confidentiality. The CURE OM registry team will regularly update our community of patients, caregivers and collaborators with progress and future plans for the CURE OM Patient Registry.

Stay tuned for updates and thank you for your continued support of this important resource! If you have any questions or comments, please email cureom@melanoma.org

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