Cost-of-Illness Study in USA & Canada.

The Foundation Fighting Blindness and Fighting Blindness Canada have partnered with Retina International on a study to gather data about the economic costs associated with inherited retinal dystrophies (IRDs) in the United States and Canada.

Participation in this study involves the completion of an online survey which includes questions about health care utilization (e.g. visits to ophthalmologists), time away from work or school, and the use of mobility and vision aids. Participation is voluntary and does not impact future participation in clinical trials or other studies.

The third-party administrator of the survey, Deloitte Access Economics, will safeguard the identity and private information of all respondents by keeping responses anonymous, destroying contact information once the survey is completed, and reporting only aggregate data that cannot be tracked back to participants.

While it’s crucial that policymakers understand how IRDs affects one’s quality of life, it’s also essential that they understand the economic impacts of IRDs. The data from this survey will be used to inform studies of the cost-effectiveness of new treatments for IRDs, identify priority research areas, and help organisations advocate for new and better service provision and reimbursement for treatments when they become available. A report from the study will be available in late summer 2020.

The data collected in the United States and Canada will be hosted together with data from the pilot cost-of-illness study for IRDs in the Republic of Ireland and the UK on a web portal called know-your-code.org. This along with other relevant surveys and studies conducted by RI and by member organizations will, we believe, provide the retina community with robust qualified data to make strong cases for support in the future.

RI will start work on the know-your-code.org portal in June and is aiming for a launch on World Sight Day 2020.

Retina International is very grateful to all our partners for making this ongoing programme of work happen these include, Retina UK, The Thomas Pocklington Trust, Fighting Blindness Ireland, Fighting Blindness Canada and the Foundation Fighting Blindness as well as AGTC, The Allergan Foundation, Jensen, MeiraGTx, Novartis, ProQR and Roche.

Retina International looks forward to announcing results in conjunction with our partners later this summer.

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