Ciitizen Registry

Ciitizen is a DLG4 natural history study that uses medical records to collect meaningful information on how a mutation in the DLG4 gene has affected a person’s life, and it includes medical record information across multiple hospitals and providers where a participant has been seen. 

 

Important information that can accelerate research is often trapped in medical records. As a result, drug researchers can’t access the information they need to advance treatments. But as a patient, you can unlock your records and contribute them to research, in a private and secure way.

 

This will be a global study; however a current limitation is medical records need to be in English as medical record review services in other languages are not yet offered. International families with English medical records can be enrolled, with additional languages supported in the future.

 

In addition to giving researchers access to cumulative data on medications, tests, labs, and medical notations, all participants will have access to their own information and can even download it to keep for their own records or share with any new providers they may see in the future.

 

The information gathered from health records can be used to further research and find better treatments for the DLG4 community by sharing anonymized data with researchers, clinicians, and pharmaceutical companies. Academic researchers will have free access (with IRB approval) while industry and pharmaceutical partners will pay a fee.