National Survey of Heart Valve Patients Reveals Missed Opportunities for Clinical Trial Awareness & Enrollment

ReddIt, a leading patient advocacy group for patients with heart valve disease, today released results of a new survey finding that most heart valve patients are “not very aware” of clinical trials, but most patients would consider enrolling in a clinical trial. 

The nationwide survey was conducted online – from October 13 to 19, 2020 – among 1,157 patients previously diagnosed with aortic, mitral, tricuspid and/or pulmonary valve disease. Over 72% of survey respondents were 60 years of age or older.

The survey found:

  • Nearly three out of four (73%) heart valve patients are “not very aware” of clinical trials.
  • 73% of heart valve patients surveyed cannot name and describe one clinical trial.
  • 90% of pre-operative patients want to learn about clinical trials.
  • Only 4% of patients surveyed have participated in a heart valve clinical trial, yet 59% of heart valve patients would consider enrolling in a clinical trial.
  • Just 13% of heart valve patients surveyed have visited to learn about clinical trials.
  • 99% of heart valve patients would visit a new ‘Clinical Trials’ section at to learn about clinical trials.

The fact that 73% of heart valve patients have little visibility to clinical trials is a missed opportunity,” said Dr. Marc Gillinov, the Chair of the Department of Cardiac Surgery at the Cleveland Clinic. “Patients deserve access to the information that can optimize their care – including clinical trials.”

During the past 20 years, therapeutic innovations evaluated through clinical trials have transformed the treatment of heart valve disease – a cardiac disorder which impacts more than 5 million Americans. For example, aortic stenosis is now treated without an incision to the chest or ribs using transcatheter aortic valve replacement (TAVR) devices.

The expense and the time required to enroll patients in a clinical trial, however, can be prohibitive. The median cost to conduct a clinical trial that leads to an approval of a medical device is $94 million on average, according to the Food and Drug Administration. Unfortunately, heart valve patients often have no idea how to learn about or enroll in a clinical trial. According to the new survey, 87% of heart valve patients have never visited, the largest clinical trials website managed by the U.S. National Library of Medicine.

“This survey revealed valuable insights about patient perceptions specific to clinical trials,” said Dr. Michael Mack, Chairman of Baylor Scott & White Health Research Institute and the national co-principal investigator of the PARTNER 3 clinical trial of TAVR. “Not only do patients want to learn about and consider enrolling in clinical trials – patients know why, how and where they want to access that information.”

Actionable solutions for patient needs, specific to clinical trial education, were also revealed in the survey. The top three educational resources requested by heart valve patients are:

  • Comprehensive websites with detailed information about clinical trials (86%)
  • Educational videos with doctors describing clinical trials (63%)
  • Downloadable brochures about clinical trials (47%)

“Thanks to this survey, we have new evidence that heart valve patients have a deep interest in learning as much as they can about clinical trials,” said Dr. Patrick McCarthy, Executive Director at Northwestern Medicine Bluhm Cardiovascular Institute and the national co-principal investigator of the MitraClip REPAIR MR research study for patients with severe mitral regurgitation. “These survey findings indicate that a wider understanding of relevant clinical trials could stimulate patient enrollment, which is often considered the Achilles’ heel of clinical trials.”

“Educated patients are empowered patients,” said Adam Pick, patient advocate and founder. “As a result of this survey, will develop new educational initiatives and technologies to address patient needs specific to clinical trials.”

Cardiology Magazine


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