Studying a Rare Disease with Dr. Tweet

In the last few months I have had an exciting opportunity to be part of a Mayo Clinic project using social networking tools to assist in the study of a rare disease, and last week we reached a milestone with publication of a study in Mayo Clinic Proceedings.

One of our key team members is Dr. Marysia Tweet, so it’s almost poetic that we’re working with Dr. Tweet to use social media in medical research. You can’t make that up!

At any rate, the paper on our pilot study of SCAD (spontaneous coronary artery dissection) is published this month in Mayo Clinic Proceedings, as reported in the Wall Street Journal and described in this Mayo Clinic news release.

The really exciting part of this story is how the research was initiated by patients, and this Mayo Clinic Medical Edge story tells how it happened:

We’re continuing to use our social media tools to help with the ongoing research into SCAD, as the Mayo Clinic research team led by Dr. Sharonne Hayes is creating a virtual registry to study SCAD. This SCAD research post on our News Blog provides the information physicians and patients need to take the first steps to be included in the study.

The pilot study showed that this kind of virtual registry is feasible; 18 women signed up for the pilot within a week, and the initial 12-person study included participants from New Zealand, the United Kingdom and Canada as well as the United States. Dr. Hayes discusses the rationale for and the implications of the study:

Finally, here are some additional sound bites about the pilot study and its implications, from Dr. Hayes, Dr. Tweet and yours truly:

Our Mayo Clinic Center for Social Media mission is to go beyond the public relations and marketing uses for social media and find ways to apply these revolutionary tools in education, research, clinical practice and in the administration of health care organizations. I was really excited to have the chance to be involved in this first publication, and that we are having an ongoing role in facilitating this patient-initiated research into a rare disease.