At the heart of our mission to cure Angelman Syndrome (AS) lies the power of connection — connecting families to resources, connecting researchers to vital data, and connecting the community to hope. In an exciting new development, the FAST Global Search & Rescue Initiative is now fully integrated into the Global Angelman Syndrome Registry, a move designed to streamline participation for families and strengthen our collective research efforts.
What is the Search & Rescue Initiative?
The FAST Global Search & Rescue Initiative was established to find and connect every individual worldwide living with Angelman Syndrome. By creating a comprehensive database of individuals, the initiative aims to accelerate research, identify candidates for clinical trials, and enhance support for families navigating life with AS.
What’s New? Integration with the Global Angelman Syndrome Registry
To enhance efficiency and simplify the participation process, the Search & Rescue program has now been fully integrated into the Global Angelman Syndrome Registry. This strategic move ensures:
- Enhanced Data Security: All information provided by families is stored within the Registry’s secure database, maintaining privacy and protection.
- Streamlined Participation: Families can now update their information effortlessly, ensuring that researchers have access to the most current data.
- Strengthened Research Efforts: A unified database allows researchers to more effectively identify participants for clinical trials and advance potential treatments.
How Families Can Participate
Participation remains simple and impactful. Families can continue to provide their information by visiting this link. In the coming weeks, this link will automatically redirect to the new dedicated page: www.angelmanregistry.info/fast-search-and-rescue.
A Focus on Consent and Security
As part of this integration, the Search & Rescue program has introduced an enhanced consent process. Families will have more control over how their information is used, with clear options for:
- Clinical Trial Contact: Consent to be contacted for potential participation in clinical trials.
- Data Inclusion in Research: Approval for their data to be included in anonymised research initiatives aimed at accelerating the search for a cure.
This focus on consent not only builds trust but also empowers families to take an active role in advancing research.
Why This Integration Matters
Combining the strengths of the Search & Rescue program with the Global Angelman Syndrome Registry creates a unified resource that is greater than the sum of its parts. This integration:
- Speeds Up Research: A larger, more comprehensive dataset helps researchers identify trends, understand AS better, and expedite the search for treatments.
- Simplifies Participation: A single, secure platform makes it easier for families to update their information and consent preferences.
- Increases Clinical Trial Access: Researchers can more efficiently find and contact potential trial participants, ensuring that promising treatments are tested and brought to the community faster.
Looking Ahead: How You Can Help
If you are a family member of someone with Angelman Syndrome, your participation is invaluable. By joining the Global Angelman Syndrome Registry, you contribute directly to research efforts and the push for a cure.
- Join the Registry: Click here to provide your information.
- Stay Informed: Follow our [news section] for updates on research progress and new clinical trials.
- Share the Message: Help spread the word by sharing this post with other families and the wider AS community.
Together, We’re Stronger
This integration is a powerful step forward in our mission to cure Angelman Syndrome. By bringing together the resources of the Search & Rescue program and the Global Angelman Syndrome Registry, we are building a stronger foundation for research, advocacy, and, most importantly, hope.
Thank you for your continued support.
Together, we can make a difference.
