Individuals who would like to participate in MacTel research are encouraged to enroll in the MacTel Project Registry. This program, also known as the Natural History Observation and Registry Study (NHOR), is a global program enrolling individuals with macular telangiectasia type 2.
Enrollment in the registry involves a one in-clinic visit with a comprehensive eye exam and the donation of a blood sample for genetic research (optional). Annual follow-up by telephone after that allows LMRI to be informed about your health and vision status and allows you to be informed of the status of the MacTel Projects. There is no charge to participants for registry services.
Immediate family members (mothers, fathers, brothers, sisters, children) of those affected with MacTel type 2 are also welcome to be screened at a MacTel clinical site.
By enrolling in the registry, individuals with MacTel are helping to advance MacTel research. Additionally, the registry serves as a contact list for participation in MacTel clinical research projects. This means that participants will remain informed about the opportunity to participate in clinical trials, if they are eligible.
To date, more than 3000 people have enrolled in the MacTel Project Registry. The registry is open, and continues to enroll new participants. There are currently more than 50 clinical sites around the world participating in the MacTel Project.