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

We would like to invite individuals like you to a web-based interview to better understand a questionnaire that may be used by adults with non-obstructive hypertrophic cardiomyopathy (nHCM). Before doing so we need to know whether you meet the study criteria (whether you are eligible to participate).
Therefore, we have a few questions for you. Your answers to these questions will be treated as confidential. Your survey responses will be stored in an access-controlled file and kept secure at all times. Personally identifiable information, such as names and locations, will be removed and your information will not be passed to any other organization without your permission. Your responses will be destroyed five years after study completion.
If you are eligible to take part in the interview based on your responses to these questions, you will be provided with a consent form, which explains how the study works and your rights as a study participant. You can then decide, based on the consent form information, whether you would like to take part or not.

You have the right to withdraw at any time. For more information about your rights, please see our privacy notice, which is available at www.iqvia.com/about-us/privacy. If you have any questions at any time, please contact the HCMA office at 973-983-7429. You may direct your questions to Lisa Salberg or Ross Hadley or to the HCMA staff. The phone line is staffed 9-7 Monday through Thursday and 9-5 Fridays Eastern time. You may email questions to pm@4hcm.org, and we will reply as soon as possible.

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


Sincerely,

Lisa Salberg
CEO and Founder

Question Title

* 1. Do you wish to proceed with the questions to see if you are eligible for this study?

Question Title

* 2. 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?

Question Title

* 3. Would you be willing to provide documentation to confirm your diagnosis, such as a 1) copy or screenshot of a medical record that clearly indicates your nHCM, or 2) confirmation of diagnosis form completed by your doctor or 3) provide authorization for the HCMA to share your information with the study team?

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