If you suspect HCM is the cause of death the HCMA can assist you.
The HCMA has access to pathologist and labs that can help you.
If you are from a medical examiners office and have questions about HCM please call the office for information on resources available to confirm your diagnosis and helpful information for the families. Phone: 973-983-7429 Fax 973-983-7870
Resources for the Medical Examiner Community
HCM may be suspected based on one or more the following findings and manner of death:
o Sudden and unexpected death of persons under 50 years of age – during activity or sleep.
o Cardiomeglia - heart weight above normal limits for BMI, gender and age
o Presence of cardiac hypertrophy - commonly in the left ventricle but possibly in the right ventricle
o Presence of myocardial disarray, interstitial fibrosis, collagen replacement, or scarring
o Septal or left ventricular free wall measurement of 1.3 or greater in any portion of the left ventricle
o Abnormal mitral valve or chordae
The HCMA has partnerships with both research and clinical laboratories that provide genetic testing for HCM and related disorders. We have arrangements with these labs to provide low cost and, in some cases, pro bono options for post-mortem genetic testing when HCM is the suspected cause of death.
The HCMA is seeking partnership with the NJ Medical Examiner community to help better understand the prevalence of sudden cardiac death in a previously undiagnosed person as well as the genetic variables that may predispose a person to this manner of presentation of HCM.
What should you do if you have a suspected HCM death?
1. Save 3 tubes of blood (minimum of 5cc’s optimal 20cc’s – yellow and purple tops preferred)
2. Do not treat samples with formalin
3. If tissue is removed from the heart Freeze samples
4. Obtain a complete family history - as detailed as possible
5. Contact the HCMA at 973-983-7429 – (after hours call 973-727-2450) for assistance in locating labs willing to accept samples for genetic testing and/or hearts for evaluation/research.
6. Counsel the family to seek complete cardiac evaluations including ECG, echocardiograms, evaluation by a cardiologist and additional testing if warranted.
Resources you should know about
The HCMA has funding to assist with shipping cost (Fedex or UPS) if the family wishes to donate the heart to science.
The HCMA can provide access to low cost and, in some cases, pro bono genetic testing.
The HCMA can assist the family in understanding HCM and identification of resources to assist in screening other family members.
The sudden death in athletes registry available at www.suddendeathathletes.org
The application attached in the attachement section on the right is to be completed by those seeking low cost or pro bono genetic testing. If you have any questions while completing the application please contact the HCMA office at 973-983-7429.