Volunteers needed to help with melanoma research proposal

Last year, we told you about the Tier 1 Pipeline to Proposals award we received from the Patient-Centered Outcomes Research Institute, which played an integral role in the creation of the new Melanoma Community Registry at Oregon Health & Science University. Our project recently came to an end, and we're working on a proposal for Tier 2 funding that's due on Jan. 30. We're hoping to enlist a few new volunteers to help develop the proposal and, if funded, implement our work plan.

Between now and Jan. 30, your contribution would include reading our Tier 1 proposal and past progress reports as well as reviewing Tier 2 proposal instructions and provided feedback on initial drafts of Tier 2 work plan. Most of this work can be done virtually, but may include one in-person meeting.

The project itself would be funded from March 2015 to March 2016. Potential volunteer roles include outreach to other patients, non-profit organizations, and other stakeholders; participating in a training on research methods; regular in-person meetings; and other activities determined by the proposal.

This will be a challenging but incredibly rewarding opportunity for anyone who is interested in making an impact on the state of early detection research for melanoma. If you're interested, please contact Katie Wilkes at info@solsurvivorsusa.org and we'll send more information in early January.

You're invited: SolSurvivors Oregon Kick-off Meeting, Sept. 16

SolSurvivors is a growing network of patients, family members, and advocates who are passionate about melanoma prevention and early detection. Join us for our first meeting in Oregon!

SolSurvivors Oregon Kick-Off Meeting
Tuesday, Sept. 16, 2014 at 6 p.m.
OHSU Center for Health and Healing, 16th Floor Library 
3303 S.W. Bond Ave. Portland, OR 97239 

Please RSVP by Sept. 10.

On the agenda for our first meeting:

• Learn how you can join a new advisory committee to provide critical insight on the new OHSU Melanoma Community Registry 
• Discuss future plans for melanoma outreach events in Oregon and Washington, such as the AIM Melanoma Walk, patient symposiums, etc. 
• Meet other volunteers who hate melanoma and are trying to do something about it!

Big news: We've been approved for PCORI funding!

Exciting news to share: SolSurvivors has been approved for a "Pipeline to Proposals" award from the Patient-Centered Outcomes Research Institute. The project is one of 30 proposals approved for these seed funds intended to build communities interested in advancing patient- and stakeholder-driven health research.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," unites patients from Oregon and Utah—two Western states with abnormally high melanoma rates—with researchers from Oregon Health & Science University and the University of Utah. Ultimately, our goal is to find a way to engage significant numbers of patients and caregivers in research design, project governance, and dissemination of findings.

This award is among the first to be made through PCORI’s new Eugene Washington PCORI Engagement Awards program. These Tier I Pipeline to Proposal awards provide seed funds to encourage the development of partnerships and research project ideas among individuals and groups who want to take an active role in health research but may not have opportunities to do so.

Our project was selected by review panels made up of patients, stakeholders, and researchers. All projects are approved pending a programmatic and budget review by PCORI staff and negotiation of a formal contract.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI's expanding portfolio now includes 279 patient-centered studies and initiatives. PCORI has awarded a total of $464.4 million since it began funding patient-centered comparative effectiveness research in 2012.