Natural History Studies and Disease Registries
Because IRDs are rare and only affect a relatively small number of people, there may be gaps in our understanding about the natural course of these diseases. One approach that can be used to address these is to conduct natural history studies. Natural history studies follow a group of people with the disease usually over a period of several years in order characterize how a disease progresses over time. In the case of IRDs, natural history studies may capture valuable information on how disease progression rates may vary between patients with different genetic mutations. A clear understanding of the natural history of a disease is very important to ensure that clinical studies are appropriately designed to accurately measure the clinical benefits of new treatments
The establishment of disease registries for patients with IRDs is another important research development. A disease registry is a database that contains information from people diagnosed with a specific type of disease. My Retina Tracker® is free on-line, registry provided by the Foundation Fighting Blindness where patients diagnosed with an inherited retinal disorder can store information about the progression of their disease and how it impacts their life. These data are accessible to appropriately qualified researchers working in the field of IRDs and may also help them to identify people who may be eligible to participate in studies, although this is not guaranteed.
Click here for details of natural history studies currently enrolling patients.