Contact Registry Launch, Survey Coming Soon

Today we are happy to announce the launch of our Contact Registry.  The Contact Registry consists of a simple form to collect patient, guardian and contact information.  It will help accomplish the following:

  • Provide data on the incidence of M-CM -- currently we only know the number of cases published in the medical literature, we don't know how many people actually have an M-CM diagnosis.
  • Show geographic holes where the medical genetics community may be unaware of M-CM.
  • Provide a contact list that can be used to communicate about research opportunities.  Registrants are not obligated to participate in research, but will be notifed about opportunities as they arise.

We hope that every patient with an M-CM diagnosis will be registered here.  If you do not have a definitive M-CM diagnosis, but think that M-CM is a strong possibility, registration would be appropriate. 

In the near future we will launch a detailed, anonymous survey of M-CM patient data.  This anonymous survey is a precursor to a full longitudinal registry. It is way to increase knowlege while we build the financial and organizational infrastructure to support our long-term goals.  Survey invitations will be sent to Contact Registry enrollees.  The survey is the creation of board member Marielle Kulling, and is part of her master's thesis at MSU.  Once the survey is launched, Marielle will be donating the data collected back to the M-CM Network and we will make results available on our website.