Part 1: Recommendations Preparatory to Research - Making Introductions and Building Partnerships

Amy A. Lemke, PhD, MS, is a Professor of Pediatrics in the Division of Clinical and Translational Research at the University of Louisville. She is also Director of Community Engaged Research at Norton Children’s Research Institute, affiliated with the University of Louisville. As Director, she leads a Research Core to support investigators in the use of qualitative approaches, survey design, and mixed methods in their research programs. Dr. Lemke is experienced in conducting multi-site studies aimed at assessing genomic research and clinical innovations and the impact on individuals, providers, and healthcare organizations. Her expertise includes the use of community engaged research strategies, such as community-based participatory research and deliberative engagement, to collaborate with underrepresented and minoritized populations in genomic testing research. Dr. Lemke’s current research focuses on: outcomes of genomic screening in a variety of settings; the utility of genomic testing for individuals, caretakers and providers; and factors that influence genomic test access and results utilization in varied populations. Additionally, she leads practice guidance and policy efforts in addressing underrepresentation in genomics research and genomics-enabled healthcare.

Barbara Leach is a Family Support Specialist/Special Projects Coordinator for the Family Support Program and the Family Support Network™ of NC-University Office at the University of North Carolina at Chapel Hill. She has over 35 years of personal and professional experience as a child and family advocate for families with children who have intellectual/developmental disabilities, behavioral health/mental health conditions, and special health care needs. Barbara has provided key leadership in state and national initiatives to improve family engagement and partnership, including serving on the NCGENES genetics project Community Consultation Team, UNC-Chapel Hill and on the national stakeholder advisory committee for the Clinical Sequencing Evidence Generating Research (CSER) Consortium. She is committed to promoting, supporting, and engaging diverse individuals and families in research, policy, and practice.

Dr. Matthew Taylor MD, PhD directs the Adult Medical Genetics clinic that serves adults and families with genetic conditions in the Denver and Rocky Mountain region.  The clinic services include genetic diagnosis, testing, and counseling and is the only such Adult Genetics Clinic in a 7-state area.  Additionally, the clinic serves as a regional hub for recruitment of patients with rare genetic diseases as well as for clinical trials in genetic diseases where novel therapies are now coming online in the trial arena. 

Dr. Taylor’s research laboratory studies inherited cardiomyopathies, major causes of heart failure and heart transplantation.  The work includes genetic, cell-based, model organism, and bioengineering approaches. He co-directs the International Familial Cardiomyopathy Registry and directs the International Danon Disease Registry. He is also involved in clinical trials for rare diseases including cardiac gene therapy. In 2014, he became Associate Director of Personalized Medicine within the newly minted Biomedical Informatics and Personalized Medicine Center where he developed the IRB protocol and consent for patient enrollment.  The Center is designed to stimulate and enable translational research that promotes the goals of personalized medicine (also referred to as ‘precision medicine’).  In 2021, Dr. Taylor became co-director of the University of Colorado National Organization of Rare Diseases Center of Excellence. The Center is designed to expand awareness, access, knowledge, research, and clinical care for persons and families with rare diseases.