Social network used to enrol rare disease patients quickly

31-Aug-2011 - Last updated on 01-Sep-2011 at 07:37 GMT

Mayo Clinic has recruited patients into a study in one week using a rare disease-specific social networking site.

A single member of the social network shared details of the study and within one week 18 people had requested information and enrolment documents. Mayo Clinic was shocked by the response.

“The speed of participant recruitment via the networking site was surprising. We did not expect to enrol all of our participants before having the opportunity to post the study on [our website]”, the researchers wrote in Mayo Clinic Proceedings.

A spontaneous coronary artery dissection (SCAD) patient and member of the Inspire forum began the process by approaching Mayo Clinic. The SCAD forum features posts from 70 women, double the size of the largest reported case series, and Mayo Clinic saw the potential of tapping into the group.

Mayo Clinic enrolled the first 12 people who completed consent forms and questionnaire and had to turn volunteers away because the institutional review board–approved maximum was reached. Participants provided medical histories and specific pathological data to a SCAD patient registry.

“A formal multicentre registry will ultimately be necessary to recruit patients early in the acute phase of their condition, and subsequently randomised clinical trials may become feasible”, the researchers wrote. Until this is created forums offer “an excellent option for a virtual multicentre registry”.

Motivated patients

In an editorial accompanying the paper, Barbara Brandom, of the University of Pittsburgh School of Medicine, said a registry of sufficient size could support development of diagnostic tests. Both Brandom and Mayo Clinic researchers emphasised the benefits of a strong patient community.

“The singular motivation and focus of patients with little-understood conditions, combined with the natural organizing framework in a social networking site, may significantly improve the timeliness and cost-effectiveness of research in these conditions”, the researchers wrote.

Social media and patient engagement are among the topics on the agenda at an Outsourcing-Pharma conference next month. The event, Patient Recruitment Outsourcing, takes place in Boston, Massachusetts on September 26 and 27.

To find out more and sign up for the event click here.