Every day, we hear about clinical trials, studies and research that seem like they’re performed by Ivy Leaguers in labs on mysterious people. But did you know there are ways patients can develop new therapies faster and cheaper for less common diseases and it's easier than you might think. Here's how:
Do an Internet search to find existing patient groups, which often have many resources and welcome new patients who want to help:
Search Google Scholar (scholar.google.com) or NIHs free digital archive, www.pubmedcentral.nih.gov, to find published papers in your disease.
Find existing clinical trials by searching sites like clinicaltrials.gov or centerwatch.com. This can give you a sense of what questions investigators are currently asking and help you determine where work is needed.
Contact with the NIH to see if there are any existing studies already under way that follow patients with your disease. This will help you meet researchers and clinicians at the NIH.
Contact the NIH Office of Rare Diseases (rarediseases.info.nih.gov), which can help link you to other patients, advocacy groups and ongoing biomedical research.
Contact organizations like Genetic Alliance (geneticalliance.org), National Organization for Rare Disorders (rarediseases.org) or FasterCures (Fastercures.org) which have information on advocacy and patient groups
Determine what group or disorders your disease belongs to. You may be able to get foundations that focus on the bigger picture to pay more attention.
Have you ever participated in a clinical trial or aided in research? If so, tell us about it.