In case you missed it, Open Medicine Foundation (OMF) has recently launched Clinical Trials Network (CTN) Lite—a streamlined research model enabling us to launch decentralised precision medicine treatment trials. The first step in launching this initiative? Get to know your priorities.
Thanks to you, our community, we received 1,258 responses to our Patient & Caregiver Survey, with an incredible 68% considered to have severe or very severe ME/CFS based on the Bell Scale.
Thanks to you, our community, we received 1,258 responses to our Patient & Caregiver Survey, with an incredible 68% considered to have severe or very severe ME/CFS based on the Bell Scale.
What We Learned
At a high level, our community identified post-exertional symptom worsening and mitochondrial dysfunction as the highest priority symptom and body system, respectively, on which our trials should focus. Other top priorities were: overall energy, cognitive dysfunction, neuroinflammation, and immune dysregulation. In write-in comments many patients also reflected on the interconnectedness of these systems and symptoms and want research to reflect a systems approach to solving the disease and finding treatments.
Our takeaways don’t stop there, though. We know there are nuances to identify from surveys like this, so we’re also diving deeper into patterns in responses. Some of the patterns we’re looking into include, but aren’t limited to:
- Severity-, duration-, and sex-based differences in priorities
- Gaps in demand for research and what’s considered most debilitating
- Preliminary implications for trial design
What Comes Next?
LIVE EVENT | Webinar
If you’d like to explore the survey results in more detail, join Dr. Danielle Meadows, OMF’s VP of Research Programs & Operations, for a webinar on June 22 at 1pm ET.
During the webinar, Dr. Meadows will review the results of the survey, patterns we have identified, key takeaways, and what we plan to do next.
We recognise that the live session time (23 June at 3am AEST) is unsuitable for most people in our region. If you’re unable to attend live, a recording will be sent to all registrants.
Now that we have a preliminary picture of the community’s priorities for precision treatment research, it’s time for us to do our due diligence. That means:
- More engagement with our community specific to the priority areas – keep an eye out for follow up surveys and interactive live sessions in the coming months
- Layering in detailed scientific rationale to identify top treatment candidates for precision trials
- Continued development of decentralised trial infrastructure so we are ready to launch the first trial quickly.