Natural History Observation Registry (NHOR)
The Natural History Observation Registry (NHOR) is a world-wide registry of individuals with Macular Telangiectasia type 2, and their family members. Enrollment in the registry involves an initial clinic visit with a comprehensive eye exam, and blood is drawn for MacTel research.
One of the objectives of The Lowy Medical Research Institute is to determine if MacTel has a genetic component. Blood drawn at registry sites is banked for genetics studies by scientists affiliated with LMRI. Genetics studies have been done on unrelated individuals with MacTel, and on families with MacTel. Registry participants play a critical role in the search for a gene.
The registry benefits both researchers and participants. Scientists affiliated with LMRI can have access to MacTel tissue samples for study. Clinicians learn about the general progression of the disease. And participants remain informed about MacTel research and the opportunity to participate in clinical trials, if they are eligible.
To date, more than 1000 people have enrolled in the MacTel Project’s Natural History Observation Registry. The registry is open, and continues to enroll new participants. To participate in MacTel research, and to have the option to participate in future clinical trials, please contact one of the Registry sites.