IRD information

IRD information for healthcare professionals

IRDs are a group of genetic ophthalmic diseases characterized by visual impairment and represent the leading cause of severe vision loss in persons between 15 and 45 years of age with an estimated incidence of 1 in every 2,000 people (Cideciyan et al. 2019; Cremers et al. 2018).

IRDs are highly heterogeneous and differ in many characteristics such as the onset of disease, varying from first year of life to adulthood; the rate of disease progression; the extent of visual impairment, and the potential involvement of other organ systems.

In 2016, the American Academy of Ophthalmology, in collaboration with IRD experts, published recommendations on clinical assessment of patients with IRDs. To know more about clinical diagnosis, genetic diagnosis and information to educate your patients, please follow this link to AAO recommendations

Educational content

Educational content (available soon)

In collaboration with experts in ophthalmology, inherited retinal disease and RNA therapy, we are developing an educational content series for HCPs involved in IRD patient care including:

  • IRD specialists
  • ophthalmologists
  • pediatric ophthalmologists
  • retina specialists
  • optometrists
  • genetic counsellors

If you want to learn more about IRDs, get access to useful content to use in your practice sign up here to access the educational content series when it is available.

Genetic testing

IRD genetic testing

For IRD patients genetic testing can provide a definitive diagnosis by knowing the underlying genetic cause of the disease. Knowing the specific mutation(s) involved could benefit patients and their family.

  • Genetic testing may identify affected family members and can inform the patient if there is a risk of passing the disease down to children or grandchildren.
  • Genetic testing can provide a more accurate prognosis which could help the patient with planning their life and finding the most adapted support for his/her needs.
  • Research into IRDs is increasing and numerous potential treatments are now being investigated. Genetic testing could identify opportunities for clinical trial participation and/or may allow access to novel approved therapies.

For a patient, the decision for genetic testing is important and requires guidance from an IRD specialist and a genetic counselor.

Learn about genetic testing

My Retina Tracker logo
My Retina Tracker

Free genetic testing in the US

We know barriers to genetic testing exist and therefore we partnered with the Foundation Fighting Blindness to offer no-cost genetic testing and genetic counselling. Their My Retina Tracker® program is for IRD patients living in the United States. 

About My Retina Tracker