Serving the HCM Spectrum Disorder Community Since 1996

Welcome to the HCMA

The HCMA is the preeminent organization improving the lives of those with hypertrophic cardiomyopathy, HCM, preventing untimely deaths and advancing global understanding.   Founded in 1996 we are committed to providing support, education, advocacy and advancing research, understanding and care to those with HCM.  This website will provide information, support options and member services.
 

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Survey Opportunity

Martha Francouer, a Masters student studying Genetic Counseling at Northwestern University is conducting a survey.  Since Northwestern University is a Recognized Center of Excellence, the HCMA is helping her circulate this survey.
 
My name is Martha Francoeur and I am a Master’s Degree student in the Northwestern University Graduate Program in Genetic Counseling. I am inviting you to be a part of a research study.

I am surveying parents, siblings, and adult children who had a young family member die due to a sudden death event that was known or suspected to be cardiac related.

The purpose of this study to learn about communication of heart-related health risks in immediate relatives of a young family member who dies suddenly. I would like to learn about your experiences   with health provider communication and if/when you were informed about potential health risks. I hope the research will help individuals who have had a young parent, sibling or child die suddenly come to medical attention sooner in the future.
If you decide to participate, you will be asked to complete an online survey that will take approximately 15-20 minutes. At the end of the survey, you will have an opportunity to win one of 25 $25 Visa gift cards in appreciation of your participation.

You may participate in this study if:

• You are over the age of 18.
• You are English-speaking.
• You are a parent, sibling, or child of at least one person who died from a sudden death event between the ages of 1 and 40 years old.
• The cause of your family member’s death was suspected to be cardiac-related.
• At least one of the family members died in the years 2006-2019.

 
Participation is voluntary and participants have the right to skip any questions or leave the study at any time. Responses will be made anonymous and will be used in academic research.

Complete the survey by using the following link: http://j.mp/311cBqg

Questions? Please contact the research team.
Martha Francoeur (Student Investigator): Marthafrancoeur2020@u.northwestern.edu
Lisa M. Castillo (Principle Investigator): Lisa.m.castillo@northwestern.edu
IRB STUDY: STU00210798