Join the Race for DYNC1H1 Treatments
On September 3, 2024, Dr. Hormos Dafsari presented to our community about his recent research, as well as his next steps for research. We will be sharing highlight from that meeting. Below is the Call to Action to participate in his upcoming research project. If you missed the meeting, you can find the recording on our Past Events page.
Action Items Summary:
Join the Race for DYNC1H1 Treatments: Your Participation is Key!
As the DYNC1H1 Association (DA), our mission is simple but urgent: to find safe, effective treatments for those affected by DYNC1H1 disorders as quickly as possible. But we can't do it alone. We need the involvement of our community – that means you!
DYNC1H1 is a rare disorder, and understanding its long-term progression is critical to developing treatments. That’s why we’ve partnered with Simon Searchlight, a platform that helps collect important data from patients over time. This "natural history study" is essential for advancing research and getting approval for new therapies. However, to make a meaningful impact, we need at least 100 patients contributing their medical data annually for five years.
Who Participates in Simon Searchlight? Simon Searchlight is designed for patients with genetic disorders that cause neurological symptoms, like DYNC1H1, and their families. The platform allows caregivers, parents, and adult patients to contribute vital information about their symptoms, medical history, behavioral history, and daily challenges. Currently, 60 DYNC1H1 patients are already registered, but to push research forward, more participation is needed. Over 3,600 patients with rare genetic conditions entrust Simons Searchlight with their information, and that information has resulted in over 80 research publications. Simon Searchlight is available in English, Spanish, Dutch, and French, and is working on creating materials in other languages.
Anyone diagnosed with a DYNC1H1 disorder can join, regardless of age or where they are on their medical journey. By joining, you’ll become part of a global effort to document the real-life experiences of DYNC1H1 patients. Researchers, like Dr. Hormos Dafsari, will use this data to analyze trends, track the progression of symptoms, and ultimately help develop treatments tailored to our community. On October 1st, Dr. Dafsari will be pulling the data for use in his next DYNC1H1 research project.
How Can You Help?
If you or a loved one has DYNC1H1, the first step is registering with Simon Searchlight. The process is simple:
- Gather your genetic report (digital or scanned if on paper).
- Register at SimonSearchlight.org (takes about 10 minutes).
- Upload your genetic report and wait for approval. This can take anywhere from a few hours to a few days.
- Create your Clinical Research ID (CRID) at thecrid.org to ensure your data is de-identified and can be used in multiple studies. Add your CRID to your Simons Searchlight profile.
- Complete all surveys on Simons Searchlight, including your medical history,* by September 30th, 2024.*
- Claim your rewards on Simons Searchlight – you can receive over $100 in gift cards for participating!
By sharing your experiences and data, you are directly contributing to the development of new treatments that could change lives. Simon Searchlight is designed to be accessible and easy to use, with surveys that adapt based on the patient’s age and condition, making it less overwhelming for families. Plus, it’s available in English, Spanish, Dutch, and French, ensuring broader global participation.
Let’s Make a Difference Together!