Patient-driven research: associations providing input into new research questions and studies, aniridia syndrome, non-ocular complications, survey studies, obtaining patient samples for research.
To run a pilot survey on social challenges related to aniridia in Europe.
To assess the quality of life of patients with aniridia Europe wide, utilizing new technology for data collection: eye condition and QL, systemic associations and QL, medical treatment and QL, surgical treatment and QL.
Prioritized list of research questions with the greatest unmet patient need arising from patient association-Action forum Manuscript of survey-based patient study across Europe.
Create and develop EU ANIRIDIA data-base of: clinical presentation, challenges, medical and surgical treatments, genetic and microstructural testing.