The HCMA is conducting this voluntary survey, and we wish to fully inform you of its purpose. The HCMA knows how important your privacy is, and we want to ensure you that your privacy will be maintained with the highest degree of confidentiality. 

The purpose of this survey is to gather preliminary information, which means we will ask you questions about your experience with HCM, and those answers will help determine if you might be a good fit for the study. Once you have completed the questions, you will have the opportunity to learn about your responsibilities, should you be interested in participating in the study, including number of visits to the clinic, types of testing you will be required to undergo, and similar information. You will then be given the opportunity to request your contact information be sent to a research coordinator who will discuss the study further with you.  

Information you choose to share in the survey containing personal identifier information (your name, address, phone, email, and answers to the questions) will NOT be shared with anyone. HCMA staff may contact you when sites open and are accepting participants.
You may opt out of completing this survey by exiting now or at any time prior to the end of the survey. Once you have submitted the survey on the final page, the only way to remove yourself is to call the HCMA office and provide your name and email address that you indicated on the survey. 

If you have any questions at any time, please contact the HCMA office at 973-983-7429 and you may direct your questions to Lisa Salberg or Ross Hadley or to the staff of the HCMA, the phone line is staffed 9-7 Monday- Thursday and 9-5 Fridays eastern time. You may email questions to pm@4hcm.org, and we will reply as soon as possible.

We have provided this introduction to ensure that all parties understand the purpose of the survey and that by completing the survey, you have given informed consent. 

Thank you for your time and attention to this important matter!


Sincerely,

Lisa Salberg
CEO and Founder

Question Title

* 1. Do you currently have Hypertrophic Cardiomyopathy (HCM). HCM is defined as walls of the left ventricle (LV) measuring 1.3cm or greater in any portion of the LV, with or without known genetic mutation?

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