The MacTel Project is an international research collaboration among clinicians and bench scientists to study idiopathic Macular Telangiectasia type 2, or MacTel. The MacTel Project aims to improve the clinical understanding of MacTel, raise awareness of the disease, and identify causes and appropriate treatments. It is a program of the Lowy Medical Research Institute, which sponsors the MacTel Project.
The disease was first described by Donald Gass in 1977. In the early 1990s, Donald Gass and Barbara Blodi described idiopathic Macular Telangiectasia type 2 in greater detail, and classified it as one of three distinct forms of idiopathic juxtafoveolar retinal telangiectasis. Little new information was published about MacTel following Gass and Blodi’s characterization. More than ten years later, that changed when a small group of clinicians and researchers convened to discuss MacTel. The MacTel Project was initiated in 2005 as a consequence of that meeting.
The MacTel project includes a natural history observation study, a registry of patients with MacTel, collaborative genetics and laboratory research programs, and an eye donor program. More than 30 centers around the world participate in the MacTel Project, making the search for information a truly global effort. These actions have dramatically improved the understanding of MacTel. They have also given patients the opportunity to participate in the search for new information and effective therapies.
One notable accomplishment of the MacTel Project is a more accurate description of the disease. Macular Telangiectasia type 2 was initially described by the blood vessel changes (telangiectasia) that occur in the retina, the light sensing tissue in the back of the eye. It is now understood that MacTel is not primarily a blood vessel disease. The blood vessel abnormalities occur secondary to other changes in the eye. It is now believed that MacTel is a neuronal disease with vascular abnormalities. Another notable accomplishment of the MacTel Project has been increased awareness of the disease among clinicians and vision science researchers. This has occurred due to clinicians and scientists involved in the MacTel Project who promote MacTel among colleagues as an important subject for research. Lastly, the MacTel Project has been critical to the success of our clinical trials, as recruitment for the clinical trials was greatly facilitated by registry.