IRDCOUNTS: Cost-of-Illness Studies

It is no secret that the prevalence and impact of IRDs at a national and global level has remained largely undocumented. The socioeconomic burden of IRDs, in addition to their impact on wellbeing 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.

We are delighted to share these studies with you here as part of Know Your Code.