Many treatment options for AMD are in the experimental phase and are not yet available to the general public. Some experimental treatments are appropriate only for “wet” macular degeneration, characterized by bleeding under the retina. Others attempt to treat the “dry” form of the disease, in which protein deposits called drusen form in the retina or large areas of cells die off (geographic atrophy). We will keep you advised on the progress of these protocols, presenting the pros and cons as they emerge.
Another major thrust of current research is towards understanding the mechanism of AMD and presenting opportunities for treatment. These include investigations on the role of nutrition, genetics, light exposure and other environmental issues. Genetics research holds great potential in finding the cause of macular degeneration and in creating future treatments.
Yet other research looks for new ways to improve low vision rehabilitation, or to restore sight. Artificial Vision, “retina chips”, implanted electrodes, miniature implanted telescopes are all part of this area.
Phases Of Research
Research on treatments starts in the laboratory where scientists work to identify the processes involved. These are called Pre-Clinical studies and there are no human participants.
Clinical trials begin with Phase I trials, which test a small number of people for safety and dose. Phase II involves several hundred subjects to test for effectiveness and continued safety and dose investigation. Phase III expands the study to thousands of people in order to confirm effectiveness and monitor safety and side effects. After the drug or treatment has been approved by the Food and Drug Administration (FDA) and made available for public use, studies continue to track side effects and success.=
In the clinical trials, large numbers of patients participate in a study. To be of value, a new therapy must be proven both safe and effective by careful unbiased studies. To prevent bias, neither the patient nor those examining the patient must know who got the treatment and who were the untreated “control” subjects. These are called double masked studies and usually yield the most reliable results. The medication is coded and patients are selected at random. Once the study is concluded, the code is broken and everyone can tell who got the placebo and who got the real drug.
Some techniques cannot be studied this way because they involve machines or surgeries. So they are structured to insure that each patient is treated exactly the same. Or, they may involve “Sham” or pretend treatments.
Many clinical studies are going on across the country. If you are interested in participating in an experimental clinical trial, go to the Clinical Trials for Wet AMD or Clinical Trials for Dry AMD. A full list of them can also be found at the website for the National Institutes of Health.
The Difficulty In Evaluating Treatments
AMD is a long term and unpredictable disease. It progresses differently in each individual. Therefore, studies may involve hundreds of patients followed for 3, 5 or even 10 years to determine if a new therapy is really effective. It is frustrating to wait for a cure or treatment, but only rigorous controls and continued follow-up can truly give us the answers we need.
Because of the number of people affected by macular degeneration, we hear about a lot of treatments that may or may not eventually be proven to help. Some experiments are performed by well-respected physicians with excellent credentials. They are being monitored by agencies such as the Food and Drug Administration (FDA) and the National Eye Institute to be sure the work is done in an unbiased, scientific manner.
Other experiments do not meet this rigorous standard and the results of the treatments are anecdotal. In other words, you only hear about the results from the people performing or receiving the treatment. Some of these may show promise; others would be considered “fringe” experiments or treatments and should be viewed cautiously. It doesn’t mean that they won’t end up being useful, just that there is no scientific data to support them.
It is just this kind of situation that has encouraged the emergence of useless and “magic” medicines and cures through the centuries. You should certainly stay informed of any activity toward a cure because we don’t know where the answers will be found, but be alert to exaggerated claims and expensive therapies that sound too good to be true.