Clinical Trials Day – 20 May 2023
The Covid Pandemic caused global loss of life and economic hardship. The negative effects of the disease linger on with long covid and a heightened realisation of our vulnerability in a connected world.
One of the positive outcomes has been the awareness of clinical trials and how important they are to answer urgent medical needs. The speed at which Covid vaccines were develop was due to several factors. Knowing you enemy- the virus DNA was shared worldwide, and researchers immediately started devising a vaccine. mRNA delivery had already been worked on for many years by researchers in the field of genetics.- inherited diseases and cancer. By far the most significant factor was money. Millions of dollars were made available to find effective vaccines and promising ones were tested on thousands of people. We all know that without these lifesaving interventions millions more would have died.
Unfortunately, clinical trials are usually far slower and less well funded. They are all subjected to vigorous oversight and very strenuous outcomes assessment.
In retinal conditions a clinical trial of a promising intervention to stop the often-severe loss of vision can take 10 years. Outcomes measures are strictly applied and often this causes a promising intervention to be abandoned. Patient advocate groups are now pushing for regulatory bodies to be more aware of Patient Relate Outcome Measurements. These PROMS are measurement tools that patients use to provide information on aspects of their health status – that are relevant to their quality of life, including symptoms, functionality, and physical, mental and social health.
Retina South Africa successfully recruited people for a clinical trial who are affected by a genetic condition- Stargardt Disease that causes severe loss of central vision. This Phase 2/3 trial tested the ability of a drug- Emixustat, to slow the rate of vision loss. Results of this trial are expected before year end.
Claudette Medefindt Head of Science at Retina South Africa implored all people with any form of retinal vision loss to register with Retina South Africa.
“We need all people affected by Age related, Diabetes related and genetic forms of retinal disease, to step forward and help us find treatments and advocate for better eye health care.”
Clinical trials day is celebrated globally to remember the work of Dr James Lind the British naval doctor who conducted the first controlled “test” on selected sailors suffering from scurvy. He found that this often-deadly disease was caused by a Vitamin C deficiency. Sadly, today many people with incurable retinal conditions turn to the internet for potential and sometimes dangerous untested interventions. Stem cells interventions particularly are often sold without the necessary trials and safety tests being done to prove their effectiveness. Retina South Africa provides all the necessary advice and information on treatments, supplements and accessible technology to assist people living with retinal vision loss.
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