Ophthalmology and Visual Sciences

Purpose of study:
The MacTel Natural History Observation and Registry (NHOR) is a world-wide registry of people with macular telangiectasia (MacTel) Type 2. This registry was created so that scientists can study data from patients with MacTel Type 2 to learn more about the disease and to develop future treatments, and participants can be informed about MacTel Type 2 research, including possible future clinical trials.

What is MacTel Type2?
MacTel Type 2 is an uncommon eye disorder that results in slow vision loss beginning in middle age. The macula is the central part of the retina which is responsible for central or reading vision. Telangiectasis refers to dilated, leaky blood vessels. Unfortunately, little medical information is known about MacTel Type 2 at this time and in many cases of MacTel Type 2 there are no known treatments to prevent vision loss.

What is involved in this study?
To be included in this registry, participants will come to the Eye Institute for one study visit. At this visit participants will have images taken of the back of the eye (the retina), a blood sample will be drawn, and an eye exam will be performed. Participants may also agree to be contacted annually by the study team to update their health information in the registry and to keep informed about any clinical trials that may be done to develop treatments for MacTel Type 2.

Compensation:
Research volunteers will not be paid for participating in this project.

You may be eligible to participate in this study if you meet these criteria.

1. You are 18 years or older
2. An eye doctor has told you that you have MacTel Type 2 (will be confirmed by a study doctor).
3. You have not yet been diagnosed with MacTel Type 2, but you have a family member (related by blood) who has MacTel Type 2 and who is part of the registry.

More Information:
IRB Approval: PRO27103, 3/02/2017