ENERGY IN ACTION – EPISODE 029
AllStripes & Cyclerion – Community Collaboration to Push Clinical Trials Forward
Richard Elles, Director of Patient Advocacy & Industry Engagement with AllStripes and Chad Glasser, Director of Clinical Research with Cyclerion Therapeutics, join us to discuss a pivotal clinical trial that Cyclerion Therapeutics has and the collaboration we have with AllStripes to help move the research initiative forward.
Can you tell us about Cyclerion’s MELAS Study?
Cyclerion Therapeutics has an ongoing clinical study in patients with Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes (MELAS) that’s evaluating the investigational drug 6463. The study is a 29 day study and looks at safety and tolerability primarily and also determining what 6463 does to the disease. Next steps are subsequent confirmatory studies to be conducted, further confirming safety and efficacy and to move closer to an eventual approval.
What is the importance of patient participation in clinical trials?
Drugs can’t be approved and the safety and efficacy of drugs can’t be evaluated without patient engagement. We have a responsibility to study drugs in a sufficient number of patients to fully understand effects and that’s how approval is justified and moves through phases of development.
What would you like qualified patients to know about participating in the trial?
We know a lot about this molecule and we feel confident in the safety profile and efficacy. This study has been designed to be as easy and feasible as possible. Things like remote visits and travel reimbursement are offered to make it more convenient for patients to participate.
What does AllStripes do and how does that work compliment pharmaceutical work?
The mission of AllStripes is to unlock new treatments for people affected by rare disease and knowing the one that is diagnosed is not just the one affected. We’ve introduced a two-sided platform that allows patients to access all of their medical records in one place while also enabling the generation of de-identified data from the community to power new treatment research from home. We’re seeking to empower patients to contribute with little effort and feel inspired to contribute to research while also having a place to advocate, share their stories and inspire others. We partner with companies like Cyclerion to gather data reported by healthcare facilities, hospital and other medical organizations and create a data set that is usable for clinical trial protocol writing, national history studies, comparative studies and other possibilities that widen the window for treatment.
How do you connect AllStripes patients with clinical trials based on their records and diagnosis?
It’s important for us to provide patients with educational resources, but also opportunities to get involved with companies like Cyclerion who are actively seeking participants in clinical trials and can help to move toward treatment options available to patients. Our platform has an updated list of clinical trials with the ability to indicate interest to receive more information about patient involvement.