Researchers testing the feasibility of collecting data
from patients with spontaneous coronary artery dissection concluded that online
social media networks were a feasible tool for creating a virtual disease
registry to better characterize an uncommon condition.
Patients with rare diseases tend to find one
another and connect because they are searching for information and
support, Marysia Tweet, MD, department of internal medicine at the
Mayo Clinic, said in a press release. Studies of rare diseases often are
underfunded, and people with these conditions are quite motivated.
Spontaneous coronary artery dissection (SCAD) is a rare,
poorly understood cause of myocardial infarction, according to the researchers.
It appears in relatively young people and represents about 1% of patients
undergoing angiography. Twice as many women are diagnosed with SCAD as men, and
roughly one-third of diagnoses occur in the peripartum period.
A member of the website Inspire, a social networking
internet site for women with heart disease, contacted one of the authors
arguing for more research into SCAD. Researchers hoped to study the disease,
but feared they would not be able to collect enough retrospective and
prospective clinical data and original diagnostic imaging studies, considering
the rarity of the condition, and because women associated with the site were
spread around the world.
Researchers asked the member of Inspire to help recruit
participants through the online support community. They surveyed 70 women and
drew their conclusions based on the 12 who were first to return the Patient
Health Questionnaire, General Anxiety Disorder scale and the Mayo Clinic
Women's Heart Clinic Cardiovascular Risk Assessment. Patients were also asked
to fill out a SCAD questionnaire developed by the researchers seeking
additional information, including current health status and medical therapies,
reproductive plans, daily physical activity and the presence of known and
potential risk factors for SCAD.
Eighteen potential participants responded within seven
days. Eight of the 12 women selected for the study were from the United States,
with the remainder coming from Canada (n=2), the UK (n=1) and New Zealand
Writing in an accompanying editorial, Barbara W.
Brandom, MD, with the North American Malignant Hyperthermia Registry and
the University of Pittsburgh Medical Center, said social media had the
advantage of costing less compared with traditional recruiting methods and,
because potential participants initiated contact with researchers first, could
avoid cold calling or other undesirable recruitment techniques to
reach out to participants.
Authority and responsibility for research into
rare medical conditions are devolving from the researchers to the
patient-participants. This is to be expected, given the current political
attitudes and views on patient privacy in the United States, she wrote.
In the case of rare conditions, greater commitment of the patients to
research appears to be necessary for the advancement of translational science
in areas relevant to their own well-being. A positive outcome is that
patient-participants and their families will have greater empowerment to
advance both the understanding and the potential treatment of their medical