An earlier report from the Pew Internet & American Life Project found that people diagnosed with rare diseases and their caregivers often turn to the Internet when seeking health information and peer support. Now researchers are starting to do the same to recruit patients for rare diseases studies.
Researchers at the Mayo Clinic were having difficulties finding survivors of spontaneous coronary artery dissection (SCAD) for a pilot study until they connected with a patient who helped them tap into the online support community WomenHeart. As CNET reports:
The survivor turned to her support community at WomenHeart and, less than a week later, had already recruited 18 patients–six more than the dozen they’d been trying to include in their pilot study.
Hayes and her team hope to create a virtual registry and DNA biobank of as many as 400 SCAD survivors and their relatives to help physicians analyze various treatment strategies and determine the genetic basis of the disease.
Similarly, findings published earlier this year in Nature Biotechnology highlighted the potential value of social media in comparative effectiveness research. The study evaluated a treatment for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and was conducted by PatientsLikeMe, health data sharing website with over 100,000 patients.
Shortly after the publication of a 2008 paper showing lithium carbonate could slow the progression of ALS, PatientsLikeMe members expressed an interest in testing the treatment through their collective experiences. As a result, the company launched an observational study and developed an algorithm to match 149 patients taking lithium with at least one other ALS patient from the site who weren’t taking the drug. (Results showed no difference in disease progression a year after treatment between those taking lithium and the control group.)
Previously: Stanford filmmakers document life with a rare disease, Drug companies turning their attention to rare diseases, Survey shows patients with rare diseases and their caregivers are avid Internet users and Patients with rare diseases share their extraordinary stories
Photo by Liz Mc