Patients with rare diseases are using the Internet to form online communities and facilitate medical research, NPR's "Morning Edition" reports.
WomenHeart Support Community
For example, in 2007, the not-for-profit advocacy group WomenHeart partnered with the online patient community Inspire to create the WomenHeart Support Community website for women with heart conditions.
The website helped connect women with a rare heart condition, called spontaneous coronary artery dissection, or SCAD.
Researchers have done few studies on the condition, partly because privacy laws make it difficult to find patients with rare diseases.
However, the WomenHeart Support Community website brought together more than 70 women with SCAD. The Mayo Clinic then set up a virtual patient registry inviting the women to submit their medical data for research purposes. The Mayo Clinic enrolled 12 patients in its first trial and hopes to enroll as many as 200 patients in a forthcoming second trial.
In addition to using websites like the WomenHeart Support Community, patients are using social networking sites, chat rooms and message boards to form online communities that could further medical research.
Sharonne Hayes, a cardiologist at the Mayo Clinic, said, "This is not investigator-initiated research, this is patient-initiated research" (Cuda-Kroen, "Morning Edition," NPR, 5/28).