Why Join The Patient Registries?
Bringing our worldwide family into one space. Stronger together.
SHINE Syndrome Foundation has worked with three amazing organizations to develop patient registries focused on collecting data about the disease and providing access to researchers as well as statistics for the community. Please take a few minutes to become familiar with each and consider participating in both of these wonderful resources.
CoRDS
Registry
We’ve heard from medical professionals and researchers and the consensus is that one of the
first and most important steps we can take as a rare disease community is to have a centralized registry in which to gather data about this disorder.
We’ve chosen to create such a registry in partnership with CoRDS in the hopes to gain a better understanding of the various mechanisms and symptoms of a DLG4-related synaptopathy as well as its progression with age, its impact on everyday life, and the therapies and treatments that work best.
The CoRDS registry is developed by medical professionals and families close to the disorder and provides more specific questions based on typical characteristics of DLG4 Synaptopathy patients. Participation in this registry is critical to building a data set to describe the history and characteristics of the disease. Learn more and join the registry below.
Simons Searchlight
Registry
Simons Searchlight is a research registry for DLG4 Synaptopathy/SHINE Syndrome that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders.
By collecting detailed information and blood samples, Simons Searchlight takes a deep dive into these disorders. They share the information and blood samples with leading geneticists and scientists around the world to use to improve the lives of people living with rare genetic neurodevelopmental disorders.
The Simons Searchlight registry is comprised of standard questionnaires designed to provide consistently collected data across many diseases to allow for easy comparison. The registry also includes DNA sample collections that will be stored by Simons for future use by researchers. Read more and get involved below.
Ciitizen
Patient
Registry
SHINE patients in the U.S. now have the option to enroll with CIITIZEN, a secure digital platform for storing existing medical records.
In addition to the benefit of having all your records in one place, signing up can help advance research, inform a better understanding of DLG4, and improve clinical trial design.
Ciitizen is easy and fast to join and has amazing support to help you with the process.
Read more and sign up below.