WG6: Patient-driven research

WG6: Patient-driven research

Patient-driven research: associations providing input into new research questions and studies, aniridia syndrome, non-ocular complications, survey studies, obtaining patient samples for research.

Tasks:

• 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.

Deliverables:

• 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.
• Teaching the supporting family members/parents.

WG 6 Leader: Prof Christina GRUPCHEVA (wg6@aniridia-net.eu)

When we are looking for something we must be aware of the perspective… Aniridia-net.eu/WG6 is looking for the right perspective!