Research is at the core of The Cute Syndrome Foundation’s mission to improve the lives of individuals and families affected by SCN8A-related disorders. Through research grant funding, clinical trial support, global collaborations, patient registries, data-sharing initiatives like Citizen Health, and educational and scientific events, TCSF works to accelerate the discovery of better treatments, expand understanding of SCN8A, and help move promising research forward for the entire community.
SCN8A Research
Clinical Trials
Participating in clinical trials is an important way to help accelerate therapeutic development. Click below to learn more about SCN8A-focused clinical trials.
TCSF Funded Research
Since 2015, the Cute Syndrome Foundation has funded nearly $500,000 in SCN8A-focused research grants to support the discovery of new treatments, improve understanding of SCN8A-related disorders, and accelerate progress toward better outcomes for individuals and families affected by SCN8A. More information about each grant can be found on our Research Grants page.
Citizen Health
Through the Cute Syndrome Foundation’s partnership with Citizen Health, individuals and families affected by SCN8A-related disorders have access to a tool that can help organize medical records and health information in one secure place. Families may also choose to contribute de-identified data to support SCN8A research and help researchers better understand the disorder over time. The platform was developed with the rare disease community in mind and is intended to help patients and caregivers more easily access their health information, prepare for appointments, and participate in research efforts if they choose.
SCN8A Registry
The SCN8A Registry Research Study, created and managed by the Hammer Lab at the University of Arizona, is a collaborative research initiative designed to collect and share important information about SCN8A-related disorders. By participating in the registry, families help researchers and clinicians better understand the natural history, symptoms, treatments, and long-term outcomes associated with SCN8A. This growing database plays a critical role in advancing research, improving care, and accelerating the development of future therapies for the SCN8A community.
SCN8A Research Grants Program
The Cute Syndrome Foundation has partnered with international SCN8A advocacy organizations to create the SCN8A Research Grants Program. This program funds innovative research focused on advancing safe, effective treatments for SCN8A-related disorders. Guided by the SCN8A Research Roadmap, this global collaborative effort brings together families, clinicians, and researchers to support high-quality projects that accelerate scientific progress and create meaningful impact for the SCN8A community.
Research
Roundtable
In July 2019, The Cute Syndrome Foundation organized an SCN8A Research Roundtable in Raleigh, North Carolina, bringing together nearly 30 leading researchers, clinicians, industry partners, and advocacy leaders for an intensive strategic planning meeting focused entirely on SCN8A. Through collaborative discussions and brainstorming sessions, participants explored the current state of SCN8A research, identified priorities for future studies and clinical trials, and strengthened partnerships aimed at accelerating the development of improved treatments and outcomes for individuals living with SCN8A.
