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IRD COUNTS – the impact of inherited retinal degenerations

IRD COUNTS – the impact of inherited retinal degenerations content

IRD COUNTS is a consortium of patient organisations and industry partners working to establish the prevalence, burden and impact of inherited retinal dystrophies (IRDs) within the UK and Republic of Ireland. Patient organisation include Fighting Blindness, Retina International, Retina UK and the Mark Pocklington Trust Foundation while Roche, Novartis, MeiraGTx and ProQr respresent the industry partners.

Given the rarity of these conditions, data regarding the prevalence of IRDs, impact on the individuals and families affected, and the cost burden to economies is lacking. This hinders development and progress of research, the commissioning of clinical services and treatments, and the planning and implementation of clinical treatment trials.

Addressing this knowledge gap, IRD COUNTS aims to better understand the real impact of living with an inherited retinal degeneration.

This is particularly timely as potential treatments begin to move through clinical trials and progress towards regulatory approval and market. As such, there is now an urgent need to collate this evidence base to strategically and confidently evidence their value for money to regulatory bodies like the European Medicines Agency (EMA) and The National Institute for Health and Care Excellence (NICE).

This project commenced in 2019 and is currently collating data via a targeted literature review. Complementing this is a patient survey in Ireland and the UK covering three areas:

  • incidence and prevalence,
  • psychological impact,
  • social and cost burden.

It is expected that data from this project will be available during Autumn 2019.