Update on the CURE OM Patient Registry

“As a patient with choroidal melanoma with metastasis to liver, lymph node and brain, I want to share as much information as possible with other patients, researchers and clinical teams while I still can. They should have access to my story, my history, what has worked for me, what has not worked for me. We need to make headway in finding a cure so the next generation is not asking the same questions we are. Their experience should be different than ours and I feel the patient registry is a step towards a cure.” – Carla Tressel, CURE OM Patient Registry Working Group Member

On March 10th, 2017, twelve members of the CURE OM Patient Registry Working Group met in person for the first time in Washington, DC. This historic event included patients, caregivers, nurses, social workers, ocular and medical oncologists all working towards the goal of developing the first patient-driven registry for ocular melanoma. 

During the day-long meeting, participants discussed what type of registry provider the CURE OM Patient Registry should utilize, the overall design of the registry, what information should be gathered and how to successfully report findings. Objectives and study protocol became main points of discussion as the members focused on patient privacy and applicable regulations in regards to data reports and the sharing of medical information. The assembled knowledge and diversity of experience drew from the patient, caregiver, and surviving family member’s perspectives and combined these with the medical expertise of OM researchers and clinicians for important knowledge-sharing conversations.

The working group then had the opportunity to share their progress at the Eyes on a Cure: Patient and Caregiver Symposium on March 11th. Questions were fielded and great discussions were had between the panelists and those at the symposium. There was a consensus that many individuals are unclear on the difference between participating in a registry versus simply filling out a survey that collects specific information. Further education about the goals and objectives of a registry and the different roles of participants is needed and the MRF’s CURE OM initiative will hold educational webinars on the topic.

The Registry Working Group agreed to offer regular updates following their meetings so that the OM community will know the progress of the registry and the decisions being made. Overall, the audience members and panelists agreed: The CURE OM Patient Registry is an important step to bring the entire patient community together.

For more information on the Registry and the full list of those on the working group, please visit our website.