Stephanie Ware

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Indiana University Bloomington
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Recent Grants

Grant: Open

Developmental and genetic function of SHROOM3

Open Date: 2023-03-01

Close Date: 2027-02-28

Grant: Close

The genetics of cardiovascular malformations: a clinical approach

Open Date: 2019-07-01

Close Date: 2022-06-30

Grant: Open

Morphogenesis and growth of the ventricular wall in development and disease

Open Date: 2017-02-15

Close Date: 2028-01-31

Articles (10)

Year:

2025

Year:

2025

Year:

2025

Year:

2025

Year:

2024

Year:

2024

Year:

2023

Year:

2023

Cardiovascular genetic counseling has expanded as an established genetic counseling specialty over the last 20 years. Despite guidelines recommending genetic counseling for heritable cardiac diseases, there have been limited descriptions of the practice model types used for different clinical indications seen in this genetic counseling subspecialty. We aimed to describe current clinical practice models used by cardiovascular genetic counselors and to document practice model strengths, challenges, and areas for improvement. Genetic counselor respondents ( n = 63) who self‐reported seeing cardiovascular indications were recruited through the National Society of Genetic Counselors and Twitter. They completed a survey describing the types of healthcare professionals with whom they collaborate to see common cardiovascular indications, the nature of their collaboration, and their qualitative experiences with their practice models. Clinical indications addressed in this survey were hypertrophic cardiomyopathy, dilated cardiomyopathy, all other cardiomyopathies, arrhythmias, aortopathies, dyslipidemias, pulmonary arterial hypertension, and congenital heart defects. Data were analyzed using descriptive statistics and thematic analysis. We found that the composition of multidisciplinary provider practice models varies by indication, though general cardiologists were the most common collaborative provider reported. Practice models including geneticists were most common for aortopathy indications. Overall, the majority of respondents were satisfied with the practice models they reported. While a wide variety of successes, challenges, and areas for improvement of practice models were reported, collaboration, communication, and access to appropriate providers for patient care were consistent themes across these three questions. To our knowledge, this is the first description of practice models used by cardiovascular genetic counselors. The results of this study add to the knowledge of this specialty of genetic counseling and assist in understanding the needs and challenges for developing cardiovascular genetics programs and clinics.

Year:

2022

Year:

2021

Collaborators (7)

Shaine Morris

Associate Professor

Baylor College of Medicine

UNITED STATES
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Sara Fitzgerald-Butt

Assistant Professor-Clinical; Genetic Counselor

Indiana University School of Medicine

UNITED STATES
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Priyanka Ahimaz

-

UNITED STATES
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Yunlong Liu

Indiana State University

UNITED STATES
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Peter White

Chief Data Sciences Officer

Nationwide Children's Hospital

UNITED STATES
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Ashwin K. Lal

Associate Professor of Pediatrics

-

UNITED STATES
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Benjamin M. Helm

-

UNITED STATES
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