From a press release from the National Institutes of Health (NIH):
The National Institutes of Health has created a new website, NIH Clinical Research Trials and You, to help people learn more about clinical trials, why they matter, and how to participate. From the first cure of a solid tumor with chemotherapy to the use of nitroglycerin in response to heart attacks, clinical research trials – or research studies involving people – have played a vital role in improving health and quality of life for people around the globe.
Clinical trials are essential for identifying and understanding ways to prevent, diagnose, and treat disease. Research has shown that among the greatest challenges to recruitment of volunteers is the lack of general knowledge about what trials involve, where they are carried out, and who may participate.
“The ability to recruit the necessary number of volunteers is vital to carrying out clinical research that leads to health and medical advances,” said NIH Director Francis S. Collins, M.D., Ph.D. “This new, centralized resource will make it much easier for the public and health professionals to learn about clinical trials and how people can participate in them.”
More about the Clinical Research Trials and You Project
The National Institutes of Health NIH Clinical Research Trials and You website contains a wealth of helpful, user-friendly information that can help you, a family member, or a friend make informed decisions about participating in a clinical trial, including:
In a compelling personal story from the Clinical Research Trials and You website, Jean, who has Parkinson’s disease, says it best: “Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.”
Clinical Trials and Eye Disease
Of course, clinical trials have also produced major advances in the treatment of eye diseases and disorders, including macular degeneration, Stargardt’s disease, and glaucoma.
For example, I’ve blogged about A New Clinical Trial for Patients Who Do not Respond to Lucentis or Avastin for Macular Degeneration, Updates on Stem Cell Clinical Trials for Dry Macular Degeneration and Stargardt’s Disease, and An Updated Clinical Trial for Totally Blind Individuals with Sleep Disorders.
I believe in science and in the scientific method, and am confident that cures for many of the eye diseases and disorders labeled as “incurable” at present will be curable in the near future by advances discovered via clinical trials.
On a personal note, a close family member was diagnosed recently with an incurable, progressive disease, and one of the conversations we had from the outset was how to find – and be accepted into – a clinical trial. I remember very well what my family member said as we discussed the ins and outs of clinical trials and research:
“I know I won’t be cured in my lifetime, but maybe – just maybe – I can do some good for other people who will follow. The thought that learning about my disease could actually help someone else is what will keep me going, I think.”
Additional Information
You might also be interested in a similar project initiated by the Mississippi State University Rehabilitation, Research, and Training Center (RRTC) to develop an online participant registry for blindness and low vision research.
I thank the National Institutes of Health and the NIH Clinical Research Trials and You website for creating this worthy project. For more information, you can contact NIHinfo@od.nih.gov.