The European Rare Eye Disease Registry “REDgistry” is the European patient registry for all rare eye diseases.
REDgistry is intended to facilitate the development of epidemiological studies, boost research, enable the identification of patients who still lack diagnosis and facilitate the preparation of cohorts for clinical trials.
As of July 2023, the first patients have been enrolled in REDgistry, after giving their informed consent, at the ERN-EYE coordinator organisation Hôpitaux Universitaires de Strasbourg by Pr Hélène Dollfus. This is an important milestone towards the development of new studies and novel treatments in the field of Rare Eye Diseases.
Patient enrolment will soon be initiated as well by the eight additional pilot centers located in Belgium, Estonia, France, Ireland, Italy, Netherlands, Spain.