Developing Infrastructure for Patient-Centered Melanoma Research - Tier II
When melanoma is detected early, patients have a 5-year survival rate of 98.1 percent. If the cancer has spread to other parts of the body, survival rates drop to 16.1 percent. Anecdotal evidence collected during Tier I of this project suggests that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection may include a lack of knowledge that melanoma can be life-threatening, denial, poor insurance coverage, lack of transportation to a provider, and failure to diagnose or treat appropriately. This patient-driven project brings together patients, academic researchers, and other stakeholders to conduct patient-centered research on melanoma prevention and early detection.
In the Tier I phase of this award, SolSurvivors supported the launch of the Melanoma Community Registry at Oregon Health & Science University by cost-sharing IT development, participating in meetings, drafting text for recruitment materials, reviewing Institutional Review Board protocols and consent language, and promoting the registry via community events. As of January 2015, the Melanoma Community Registry had signed up over 2,300 patients.
In the Tier II phase of our project, we plan to build on the progress we made in Tier I, working toward a large-scale comparative effectiveness research study that will ultimately reduce mortality rates of melanoma. Our aims are to: (1) continue to develop our network of researchers, patients, caregivers, clinicians, and other stakeholders; (2) develop a list of potential comparative effectiveness research questions, using surveys and focus groups; and (3) draft a Tier III Pipeline to Proposals application.