For Research Participants

Research Study Participation – Get Involved!

We are currently enrolling participants in various studies aimed at identifying the genes linked to multiple inheritable heart conditions. All studies have been reviewed and approved by the Partners (Brigham and Women’s and Massachusetts General Hospitals) Human Research Review Committee. Study participation is voluntary and at no cost to study participants.

To enroll in a study, each subject must give his or her permission to be included in the study by signing a copy of our research study consent form (provided at the time of study enrollment).

Study participation then generally involves the following:

  1. Review of your personal health history
  2. Review of your family health history and construction of a family tree
  3. Review of prior, relevant  medical records (such as echocardiogram, EKG) confirming diagnosis. We provide a Medical Record Release form to obtain these records.
  4. A limited medical evaluation, possibly including non-invasive studies (such as a research echocardiogram or EKG)
  5. A blood (or saliva) sample for DNA extraction and analysis

Ongoing Research Studies:

  • Molecular Genetic Analyses of Cardiomyopathies
  • Molecular Genetic Analyses of Cardiac Arrhythmias
  • Molecular Genetic Analyses of Cardiac Structural Disorders (Congenital Heart Disease)
  • Molecular Genetic Analyses of Neurologic Disorders
  • Molecular Genetic Analyses of Vascular Abnormalities
  • Molecular Genetic Analyses of Premature Coronary Disease Risk Factors

Ongoing Clinical Trials:

  • The ‘VANISH’ HCM clinical trial – a randomized clinical drug trial testing whether a blood pressure medication can prevent or slow down the progression of Hypertrophic Cardiomyopathy (HCM) in young HCM patients (ages 8 -30).
  • The ‘MED-SEQ study’ –The Med Seq project is a groundbreaking study looking at family history and the integration of advanced Genomic Testing into clinical medicine. Med Seq is a randomized study with all participants undergoing traditional cardiomyopathy genetic screening – and 50% of participants having the opportunity to have their whole genome screened. Available to patients with Hypertrophic or Dilated Cardiomyopathy.

If you would like to participate in any of these studies, please contact our study coordinator Barbara McDonough, RN by phone at (617) 432-1006 or by email at