In the Journals

Social media aided in recruiting for clinical trial in rare disease

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 (n=1).

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 conditions.”

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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 (n=1).

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 conditions.”

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