CoRDS Registry Now Has Complete Online Sign-up
I just completed an interview where I was asked why we started the M-CM Network. One of the most fundamental reasons was because nobody was counting people with M-CM. A year ago, the only incidence statistic we had was the number of cases reported in the medical literature, and clearly not every case is represented this way. Our new contact registry is meant to directly address this issue.
For the past year or so I've been corresponding with Liz Donohue who runs the CoRDS (Coordination of Rare Diseases at Sanford) registry -- and following the development of their project. CoRDS aims to track people affected by any rare disease so that studies can be mounted that target signs and symptoms that may cross the borders of any individual rare disease. CoRDS provides another way for M-CM patients to be counted in the medical research community.
CoRDS has been evolving over the past year and now has full online enrollment available. It is a two-step process. First you express interest in registering via an online form. Then you are sent an email with instructions to log into a portal where you review and complete a consent form and then complete two additional short forms. I just enrolled Signe this way and the whole thing took about 20 minutes.
Please consider registering with CoRDS as a way to promote inclusion of M-CM in cross-disease research.