Participant Roadmap

Research volunteers play a key role in enabling Mayo Clinic researchers in the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) to reach their goal of initiating cell therapy-based clinical trials for HLHS. Only by studying tissue, blood, images and other data from people with HLHS and their family members can researchers learn more about what causes HLHS and how the disease can best be treated.

Those who may be able to participate in HLHS research are:

  • People with HLHS
  • The biological parents of people with HLHS
  • Siblings and other relatives of people with HLHS

The HLHS research participation opportunities available to you depend on which of the above criteria you meet. Three research studies, each overseen by one of the program's principal investigators, have been approved by the Institutional Review Board at Mayo Clinic and are currently seeking participants.

 

Regenerative Strategies protocol

Timothy J. Nelson, M.D., Ph.D.

Human Genetics protocol

Timothy M. Olson, M.D.

Imaging and Outcome protocol

Patrick W. O'Leary, M.D.

Person with HLHS Discarded surgical tissue (collected during a planned surgery) or skin sample Blood sample
Family history questionnaire
2 clinical visits — 1 year apart
2 echocardiograms (ultrasounds) — 1 year apart
2 MRIs — 1 year apart
2 blood samples — 1 year apart
1 chest x-ray
Biological parents Skin sample Blood sample
Family history questionnaire
1 echocardiogram
Siblings/other relatives None at this time Blood sample
Family history questionnaire
1 echocardiogram

Contact

The Program for HLHS has a full-time study coordinator available to provide you with more information about participating in HLHS research and to answer your questions. Please contact:

Julia Thebiay
Study Coordinator
507-538-8425
Email