Time is Running Out

Last week I mentioned that I was helping WEGO Health recruit folks who are affected by IPF to be members of a patient advisory board.  The response has been very positive.  This is an exciting opportunity for those of us in the IPF community and I am really looking forward to helping get this project rolling.

Time is running out to be considered as part of this team.  The research company that is asking for our input is wanting to get started with this board next week.

Here is some information on what board members will be helping to accomplish:

The role of advisory board member is to inform the development of Monarc Bionetworks' solutions -- ranging from providing input on clinical trial protocols, where the company focuses its research efforts, technology selection for trials, and insights on what it's like to live with IPF on a day to day basis. With an advisory board in place, we hope to ensure MonARC's efforts directly support patient and caregiver needs, and together through our insights, we hope to drive more patient-centered research and care. Our goal is to have the advisory board consist of 3 patients with IPF and 2 caregivers

monARC Bionetworks activates Patient Powered Research Networks, Powers Connected Clinical Trials, and Unlocks Integrated Learning Tools that help to generate meaningful insights into specific disease related research.

If you might be interested in participating as a member of this advisory board, and help to improve the way clinical trials are conducted, head on over to the WEGO Health Experts Platform and apply today.

If you have any questions, you can contact me via the email link on the sidebar or by commenting to this post.

Update - 2/19/17

The Patient Advisory Board has been selected and the project will officially kick off tomorrow.  I am very excited to be working with monARC Bionetworks to help "...ensure MonARC's efforts directly support patient and caregiver needs, and together through our insights, we hope to drive more patient-centered research and care."

I'll keep you updated with our progress.