We are pleased to announce the launch of The Cute Syndrome Foundation Global SCN8A Survey Series, a collaborative effort between The Cute Syndrome Foundation and the National Organization for Rare Disorders (NORD) to study SCN8A. TCSF supports research on rare diseases and how they progress over time - natural history studies.
OVERVIEW OF RESEARCH STUDY
TCSF Global SCN8A Survey Series is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the SCN8A Community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the registry sponsor, The Cute Syndrome Foundation will ensure that data privacy and confidentiality are strictly maintained. Participation in TCSF Global SCN8A Survey Series is free and voluntary, and participants may withdraw at any time.
TCSF Global SCN8A Survey Series is a powerful opportunity for individuals with SCN8A and their family members to contribute directly to research that will enhance our understanding of SCN8A, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of SCN8A - every patient experience is a unique and invaluable part of the natural history of SCN8A.
For further information or to join, please contact:
Shelley Frappier, firstname.lastname@example.org