What is the Nervosave Survey?
CMTA-STAR Alliance Partner Nervosave Therapeutics, a France-based biotech company, is seeking participants for an online survey to understand patient perspectives on a new genetic therapy under development for CMT1A. According to the company, the therapy offers a unique approach, delivering long-lasting benefits to the arms and legs through a one-time set of localized injections. The therapy has shown both safety and encouraging results in models of CMT1A, as well as in monkeys and sheep. The survey aims to gather insights from the CMT1A community about their condition and feelings toward this type of treatment.
Why Participate in the Nervosave Survey?
By participating in this survey, you contribute to research that could influence the future of CMT1A treatments. Your feedback will help shape patient-centered approaches to therapy development, ensuring that the needs and priorities of patients are at the forefront.
Who Can Participate? ?
Nervosave Therapeutics is looking for:
- Individuals with genetically confirmed CMT1A
- Symptomatic individuals with a confirmed family history of CMT1A
- Parents of children with genetically confirmed CMT1A
What’s Involved?
Participation involves completing a confidential online survey about your experiences with CMT1A and your thoughts on genetic therapy as a potential treatment option.
CMTA-STAR’s Role in Advancing Research
As a global leader in accelerating CMT research, CMTA is proud to support this opportunity through our Patients as Partners in Research program. Together with Nervosave Therapeutics, we are connecting the CMT1A community with critical research addressing real-world challenges and advancing meaningful treatment options.
Register with Patients as Partners in Research Today
CMTA’s Patients as Partners in Research program connects individuals with CMT to groundbreaking studies, like those exploring Nervosave’s genetic therapy, should this advance to a clinical trial. Registering today ensures you’re among the first to hear about new trials and opportunities to participate in and help accelerate CMT research.
If you’re not yet registered with Patients as Partners in Research, now is the time! Registration is free, secure, and open to everyone with CMT. Signing up today means you’ll be the first to know when new trials are announced, and you’ll always be in the loop with the latest advances in research. Together, we accelerate the research that brings us closer to effective treatments and a cure.
Create Your Patients as Partners in Research Profile
Update As of March 2025
This survey has now closed. Thank you to everyone who participated! With more than 200 responses, we surpassed our recruitment goal. Your contributions provided valuable data that will help accelerate future CMT research.
Researchers will now analyze the anonymized data, and we look forward to sharing updates as Nervosave’s work progresses. If you have any questions or want more information, please get in touch with research@cmtausa.org.
CMT research moves forward because of you. Stay involved by joining Patients as Partners in Research. Register today and check the box for email updates about new research opportunities. Make sure to check our Partners in Research page for all of our active research opportunities.
Published on: January 23, 2025
Updated on: March 17, 2025