Here are some points to bear in mind if you see one of these adverts:
- Always discuss with your own ophthalmologist or GP if you are considering a treatment.
- Remember, there is currently only one treatment for an inherited retinal condition that has met regulatory requirements. This treatment, which is specifically for people with sight loss caused by faults in the RPE65 gene, is available on the NHS.
- Other treatments are being tested in clinical trials, but you will never be asked to pay to participate in a genuine research study. Nobody should demand payment for an experimental treatment.
- The gold standard of evidence for a treatment’s safety and efficacy is data from a series of rigorously conducted clinical trials, the results of which should be open to scrutiny by other researchers and published in scientific journals. Even if a clinic is selling a treatment in a country with less stringent regulation than the UK, they should be able to provide this evidence for you to share with your own ophthalmologist and make an informed decision about risks and benefits. You can find out more about clinical trials by watching our webinar featuring Dr Salwah Rehman.
- All treatments carry risk, and without rigorous testing, this risk remains unquantified. People have lost their remaining vision after paying for stem cell or bee venom treatments abroad. There may also be other risks to health. Proper clinical trials involve regulatory and ethics committee oversight, as well as close monitoring of participants over a long period so that any problems can be recorded and managed; if necessary the trial will be stopped.
- Claims that a particular treatment can cure a multitude of ills, from retinitis pigmentosa to multiple sclerosis, are a red flag. Different conditions have different underlying causes and mechanisms and usually require targeted treatment.
- At Retina UK, we will always do our best to tell our community about significant progress in the development of genuine treatments. For example: RetinaUK.org.uk/research-news/exciting-developments/ and RetinaUK.org.uk/research-news/encouraging-results-from-proqr-ush2a-clinical-trial/ .
- Our Helpline team can offer information and support, and is in regular contact with our Research Development Manager. You can contact the Helpline on 0300 111 4000 or Helpline@RetinaUK.org.uk.
At Retina UK, we are working hard to make accessible treatments a reality for more of our community. We have spent more than £16 million on research grant funding since the charity was founded, resulting in significant developments in understanding that have revealed potential therapeutic targets and opened up avenues for treatment development. We work closely with researchers and the pharmaceutical industry so that we can share their latest news and opportunities to participate in studies.