Implementing Precision Medicine for Dilated Cardiomyopathy: Insights From the DCM Consortium

Elizabeth Jordan^{1

2}, Hanyu Ni^{1

2}, Patricia Parker^{1

2}, Daniel D Kinnamon^{1

2}, Anjali Owens³, Brian Lowes⁴, Chetan Shenoy⁵, Cindy M Martin⁶, Daniel P Judge⁷, Daniel P Fishbein⁸, Douglas Stoller⁴, Elina Minami⁸, Evan P Kransdorf⁹, Frank Smart¹⁰, Garrie J Haas^{1

11}, Gordon S Huggins¹², Gregory A Ewald¹³, Jamie Diamond¹⁴, Jane E Wilcox^{15

16}, Javier Jimenez¹⁷, Jessica Wang¹⁶, Jose Tallaj¹⁸, Mark H Drazner¹⁹, Mark Hofmeyer²⁰, Matthew T Wheeler²¹, Omar Wever Pinzon²², Palak Shah²³, Stephen S Gottlieb²⁴, Stuart D Katz²⁵, Supriya Shore²⁶, W H Wilson Tang²⁷, Ray E Hershberger^{1

2

11}; DCM Consortium

Affiliations

¹ The Davis Heart and Lung Research Institute (E.J., H.N., P.P., D.D.K., G.J.H., R.E.H.), The Ohio State University, Columbus.
² Division of Human Genetics, Department of Internal Medicine (E.J., H.N., P.P., D.D.K., R.E.H.), The Ohio State University, Columbus.
³ Division of Cardiology, Center for Inherited Cardiovascular Disease, Perelman School of Medicine, University of Pennsylvania, Philadelphia (A.O.).
⁴ University of Nebraska Medical Center, Omaha (B.L., D.S.).
⁵ University of Minnesota, Minneapolis (C.S.).
⁶ Houston Methodist Hospital, TX (C.M.M.).
⁷ Medical University of South Carolina, Charleston (D.P.J.).
⁸ University of Washington, Seattle (D.P.F., E.M.).
⁹ Smidt Heart Institute, Cedars-Sinai Medical Center, Los Angels, CA (E.P.K.).
¹⁰ Louisiana State University Health Sciences Center, New Orleans (F.S.).
¹¹ Division of Cardiovascular Medicine, Department of Internal Medicine (G.J.H., R.E.H.), The Ohio State University, Columbus.
¹² Cardiology Division, Tufts Medical Center & Tufts University School of Medicine, Boston, MA (G.S.H.).
¹³ Washington University, St. Louis, MO (G.A.E.).
¹⁴ Emory University Healthcare, Atlanta, GA (J.D.).
¹⁵ Northwestern University Feinberg School of Medicine, Chicago, IL (J.E.W.).
¹⁶ University of California Los Angeles Medical Center (J.W.).
¹⁷ Miami Cardiac & Vascular Institute, Baptist Health South, FL (J.J.).
¹⁸ University of Alabama at Birmingham (J.T.).
¹⁹ University of Texas Southwestern Medical Center, Dallas (M.H.D.).
²⁰ MedStar Health Research Institute, MedStar Washington Hospital Center, DC (M.H.).
²¹ Division of Cardiovascular Medicine, Stanford University School of Medicine, CA (M.T.W.).
²² University of Utah, Salt Lake City (O.W.P.).
²³ Inova Schar Heart & Vascular, Falls Church, VA (P.S.).
²⁴ University of Maryland School of Medicine, Baltimore (S.S.G.).
²⁵ New York University Langone Medical Center (S.D.K.).
²⁶ Michigan Medicine, Ann Arbor (S.S.).
²⁷ Heart Vascular & Thoracic Institute, Cleveland Clinic, OH (W.H.W.T.).

PMID: 40528765
PMCID: PMC12354196 (available on 2026-06-18)
DOI: 10.1161/CIRCGEN.125.005078

Implementing Precision Medicine for Dilated Cardiomyopathy: Insights From the DCM Consortium

Elizabeth Jordan et al. Circ Genom Precis Med. 2025 Aug.

. 2025 Aug;18(4):e005078.

doi: 10.1161/CIRCGEN.125.005078. Epub 2025 Jun 18.

Authors

Affiliations

¹ The Davis Heart and Lung Research Institute (E.J., H.N., P.P., D.D.K., G.J.H., R.E.H.), The Ohio State University, Columbus.
² Division of Human Genetics, Department of Internal Medicine (E.J., H.N., P.P., D.D.K., R.E.H.), The Ohio State University, Columbus.
³ Division of Cardiology, Center for Inherited Cardiovascular Disease, Perelman School of Medicine, University of Pennsylvania, Philadelphia (A.O.).
⁴ University of Nebraska Medical Center, Omaha (B.L., D.S.).
⁵ University of Minnesota, Minneapolis (C.S.).
⁶ Houston Methodist Hospital, TX (C.M.M.).
⁷ Medical University of South Carolina, Charleston (D.P.J.).
⁸ University of Washington, Seattle (D.P.F., E.M.).
⁹ Smidt Heart Institute, Cedars-Sinai Medical Center, Los Angels, CA (E.P.K.).
¹⁰ Louisiana State University Health Sciences Center, New Orleans (F.S.).
¹¹ Division of Cardiovascular Medicine, Department of Internal Medicine (G.J.H., R.E.H.), The Ohio State University, Columbus.
¹² Cardiology Division, Tufts Medical Center & Tufts University School of Medicine, Boston, MA (G.S.H.).
¹³ Washington University, St. Louis, MO (G.A.E.).
¹⁴ Emory University Healthcare, Atlanta, GA (J.D.).
¹⁵ Northwestern University Feinberg School of Medicine, Chicago, IL (J.E.W.).
¹⁶ University of California Los Angeles Medical Center (J.W.).
¹⁷ Miami Cardiac & Vascular Institute, Baptist Health South, FL (J.J.).
¹⁸ University of Alabama at Birmingham (J.T.).
¹⁹ University of Texas Southwestern Medical Center, Dallas (M.H.D.).
²⁰ MedStar Health Research Institute, MedStar Washington Hospital Center, DC (M.H.).
²¹ Division of Cardiovascular Medicine, Stanford University School of Medicine, CA (M.T.W.).
²² University of Utah, Salt Lake City (O.W.P.).
²³ Inova Schar Heart & Vascular, Falls Church, VA (P.S.).
²⁴ University of Maryland School of Medicine, Baltimore (S.S.G.).
²⁵ New York University Langone Medical Center (S.D.K.).
²⁶ Michigan Medicine, Ann Arbor (S.S.).
²⁷ Heart Vascular & Thoracic Institute, Cleveland Clinic, OH (W.H.W.T.).

PMID: 40528765
PMCID: PMC12354196 (available on 2026-06-18)
DOI: 10.1161/CIRCGEN.125.005078

Abstract

Clinical genetic evaluation of dilated cardiomyopathy (DCM) is implemented variably or not at all. Identifying needs and barriers to genetic evaluations will enable strategies to enhance precision medicine care. Cardiologist investigators of the DCM Consortium from US advanced heart failure/transplant (HF/TX) programs conducted an online survey in June 2024 to collect demographics, training, program characteristics, genetic evaluation practices, and implementation needs for DCM. An in-person discussion followed. Twenty-five cardiologists (28% female, 12% Hispanic, 68% White) participated in the survey and 15 in the discussion; genetics training backgrounds varied greatly. Clinical genetic testing for DCM was conducted at all institutions with annual patient uptake ranging from 5%-70% (median 25%). Thirteen respondents (52%) did not use selection criteria for offering testing in their personal practice whereas others selected patients based on specific clinical and family history data. Eight (32%) ordered testing by themselves, and the remainder had testing managed mostly by a genetic counselor or others with genetic expertise (16/17; 94%). Six themes were distilled from open-ended responses, including access to genetics services, navigating uncertainty, knowledge needs, cost concerns, family-based care barriers, and institutional infrastructure limitations. Following an in-person discussion, four areas were identified for focused effort: improved reimbursement for genetic services, genetic counselor integration with HF/TX teams, improved provider education resources, and more research to find missing heritability and to resolve uncertain results. This needs assessment of the DCM Consortium underscores the implementation challenges in the provision of DCM genetic evaluations in HF/TX programs. Targeted plans to facilitate precision medicine for DCM are needed.

Keywords: cardiomyopathy, dilated; genetic testing; heart failure; precision medicine.

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Conflict of interest statement

None.

Update of

Implementing Precision Medicine for Dilated Cardiomyopathy: Insights from The DCM Consortium.
Jordan E, Ni H, Parker P, Kinnamon DD, Owens A, Lowes B, Shenoy C, Martin CM, Judge DP, Fishbein DP, Stoller D, Minami E, Kransdorf E, Smart F, Haas GJ, Huggins GS, Ewald GA, Diamond J, Wilcox JE, Jimenez J, Wang J, Tallaj J, Drazner MH, Hofmeyer M, Wheeler MT, Pinzon OW, Shah P, Gottlieb SS, Katz S, Shore S, Tang WHW, Hershberger RE; DCM Precision Medicine study of the DCM Consortium. Jordan E, et al. medRxiv [Preprint]. 2024 Nov 26:2024.11.22.24317816. doi: 10.1101/2024.11.22.24317816. medRxiv. 2024. Update in: Circ Genom Precis Med. 2025 Aug;18(4):e005078. doi: 10.1161/CIRCGEN.125.005078. PMID: 39649582 Free PMC article. Updated. Preprint.

References

1. Martin SS, Aday AW, Almarzooq ZI, Anderson CAM, Arora P, Avery CL, Baker-Smith CM, Barone Gibbs B, Beaton AZ, Boehme AK, et al. 2024 Heart Disease and Stroke Statistics: A Report of US and Global Data From the American Heart Association. Circulation. 2024;149:e347–e913. DOI: 10.1161/CIR.0000000000001209. - DOI - PMC - PubMed
1. Hershberger RE, Hedges DJ, Morales A. Dilated cardiomyopathy: the complexity of a diverse genetic architecture. Nat Rev Cardiol. 2013;10:531–47. DOI: 10.1038/nrcardio.2013.105. - DOI - PubMed
1. Wilde AAM, Semsarian C, Marquez MF, Sepehri Shamloo A, Ackerman MJ, Ashley EA, Sternick EB, Barajas-Martinez H, Behr ER, Bezzina CR, et al. European Heart Rhythm Association (EHRA)/Heart Rhythm Society (HRS)/Asia Pacific Heart Rhythm Society (APHRS)/Latin American Heart Rhythm Society (LAHRS) Expert Consensus Statement on the State of Genetic Testing for Cardiac Diseases. Heart Rhythm. 2022;19:e1–e60. DOI: 10.1016/j.hrthm.2022.03.1225. - DOI - PubMed
1. Hershberger RE, Givertz MM, Ho CY, Judge DP, Kantor PF, McBride KL, Morales A, Taylor MRG, Vatta M, Ware SM. Genetic Evaluation of Cardiomyopathy-A Heart Failure Society of America Practice Guideline. J Card Fail. 2018;24:281–302. DOI: 10.1016/j.cardfail.2018.03.004. - DOI - PMC - PubMed
1. Musunuru K, Hershberger RE, Day SM, Klinedinst NJ, Landstrom AP, Parikh VN, Prakash S, Semsarian C, Sturm AC, American Heart Association Council on G, et al. Genetic Testing for Inherited Cardiovascular Diseases: A Scientific Statement From the American Heart Association. Circ Genom Precis Med. 2020;13:e000067. DOI: 10.1161/HCG.0000000000000067. - DOI - PubMed

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Implementing Precision Medicine for Dilated Cardiomyopathy: Insights From the DCM Consortium

Affiliations

Implementing Precision Medicine for Dilated Cardiomyopathy: Insights From the DCM Consortium

Authors

Affiliations

Abstract

Conflict of interest statement

Update of

References

Grants and funding

LinkOut - more resources

Full Text Sources

Research Materials

Miscellaneous