Natural History Observation Study (NHOS)

The Natural History Observation Study (NHOS) was the first study to examine people with MacTel over a long span of time. Through the study, more than 400 participants had eye and health exams every year, for a period of five years. This information was recorded and studied by physicians and scientists to look for similarities between people who have MacTel. It also helped people understand how the disease progresses over time.

The Natural History Observation Study was the first study to examine health-related quality of life in MacTel patients. Results of the NHOS showed that MacTel patients have reduced visual function compared to people without MacTel. Even though MacTel participants had measurable trouble with vision, standard visual acuity tests (i.e. reading the eye chart) did not always accurately reflect this. Because of this observation, LMRI’s clinical studies do not rely on visual acuity to determine how effective CNTF is as a therapy for MacTel.

Through the NHOS, we learned that the average age of diagnosis for MacTel patients is 57 years old. We also learned about the rate of disease progression, both as the patient experiences it, as vision loss, and as observed by the clinician, on eye exam images.

The NHOS found that some systemic conditions occur more frequently in MacTel patients than in the general population. This has been an important clue for researchers; one they are currently investigating.

The Natural History Observation Study is not enrolling new patients. Participants will be completing their final clinic visits by December 2015, after which time this study will be completed. The opportunity to participate in MacTel research still exists through the Natural History Observation Registry.