We are pleased to announce the launch of the Gorlin Syndrome Alliance Patient Registry (GSAPR), a collaborative effort between the Gorlin Syndrome Alliance and The National Organization for Rare Disorders (NORD®) to study Gorlin syndrome (GS). The GSA supports research on rare diseases and how they progress over time - natural history studies.
OVERVIEW OF RESEARCH STUDY
The Gorlin Syndrome Alliance Patient Registry (GSAPR) 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 Gorlin syndrome 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 GSA will ensure that data privacy and confidentiality are strictly maintained. Participation in the GSAPR is free and voluntary, and participants may withdraw at any time.
The GSAPR is a powerful opportunity for individuals with Gorlin syndrome and their family members to contribute directly to research that will enhance our understanding of Gorlin syndrome, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of Gorlin syndrome - every patient experience is a unique and invaluable part of the natural history of Gorlin syndrome.
For further information or to join, please contact: 267.689.6443 or email email@example.com