IRDCOUNTS: RI's Cost of Illness Studies
Our IRDCOUNTS Cost of Illness research explores how retinal conditions affect people, families, and society, looking at healthcare costs, employment and productivity, the impact on caregivers, quality of life, and the wider economic and social burden.
IRDCOUNTS - Cost of Illness Studies
It is no secret that the prevalence and impact of IRDs at a national and global level have remained largely undocumented. The socioeconomic burden of IRDs, in addition to their impact on well-being and mental health, has been felt by patients, health advocacy organisations, health care providers, and scientists the world over.
However, the glaring lack of data in this area hinders the development and commissioning of clinical services, treatments, and the planning and implementation of clinical treatment trials.
To address this data vacuum, Retina International have had ongoing collaborations with our patient partners to co-create surveys that would ask the questions no one else has.
The information our patient community has shared with us through these surveys has laid bare the stark realities and impacts of living with an IRD. The real-world data we have extracted from this study will provide an irrefutable platform for advocates in this field, and open the doors to increased awareness and action around creating meaningful supports and therapies for those living with an IRD.
Pilot Study: Republic of Ireland & United Kingdom
In 2019, IRD COUNTS – a patient led multi-stakeholder consortium managed by Retina International, engaged Deloitte Access Economics to estimate the disease burden and economic impact of Inherited Retinal Dystrophies (IRDs) in the Republic of Ireland (RoI) and United Kingdom (UK) from a societal perspective – a cost-of-illness study. This approach involved estimating the number of people with IRDs in a base period (2019) and the costs attributable to IRDs in that period.
This pilot study relates exclusively to ten forms of IRDs: Retinitis Pigmentosa, Usher Syndrome, Stargardt Disease, LCA/EOSRD, Best Disease, Cone Dystrophy, Cone-Rod Dystrophy, Achromatopsia, Choroideremia and X-Linked Retinoschisis.
The study shows that in both the ROI and UK the impact on the wellbeing and productivity of the affected individual and their families was significant.
Further Cost of Illness Studies
In 2021, we expanded our work with the Cost of Illness Study of Inherited Retinal Diseases in the USA and Canada.
The study explored the financial and social impact of IRDs on individuals and families, revealing that the greatest costs were associated with reduced well-being and quality of life, followed by lost employment opportunities and reduced productivity. People living with IRDs were less likely to be in paid employment than the general population, while direct healthcare costs accounted for a smaller proportion of the overall burden.
These findings highlighted the wider impact of IRDs and provided valuable evidence to advocate for better support, improved access to employment and services, and greater recognition of the challenges faced by the IRD community.
Access the full report here
AMD Impact: Cost of Illness Study
Our AMD Impact Study examined the socioeconomic impact of late-stage age-related macular degeneration (AMD), including both neovascular AMD and geographic atrophy.
The study explored:
- Direct healthcare costs
- Productivity impacts
- Caregiver burden
- Quality of life and well-being
Countries included:
- United States
- Germany
- Bulgaria
Further Work
Our research aims to
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