Welcome,
 
My name is Emily Callahan and I am a Master’s in Genetic Counseling student at the University of Maryland Baltimore.  I would like to invite you to participate in a research study.
 
The purpose of this study is to understand the factors that impact the decision made by at-risk family members to have an echocardiogram and/or genetic testing for Hypertrophic Cardiomyopathy (HCM). This study is expected to help healthcare providers better understand what is most important to family members when making these health care decisions.
 
This is an online survey that will take you approximately 15-20 minutes to complete.  The survey contains questions about your personal health care decisions as related to Hypertrophic Cardiomyopathy (HCM).
 
You are eligible to complete this survey if you have a family member with HCM, or Hypertrophic Obstructive Cardiomyopathy (HOCM), and have had to make the decision to have cardiac screening or genetic testing for HCM. “Cardiac screening” is either an echocardiogram (ultrasound of the heart) or a cardiac MRI. You also must be over age 18 and English-speaking.
 
You are not eligible if you have a family member who has been diagnosed with a syndrome that contains HCM, such as Danon disease, Noonan syndrome, or Pompe disease. You are also not eligible to participate if you were the first person in your family to be diagnosed with HCM.
 
Your participation is voluntary.  There are no direct benefits from participating in this research study, however, future results may benefit the HCM community as a whole. The possible risks or discomforts that may be encountered within this study are minimal.  If you feel any discomfort, you may stop participating at any time without penalty or loss of benefits to which you are otherwise entitled.  You are free to decline to answer any question you do not wish to answer for any reason.  This survey may only be taken once.  Responses will not be used for any purpose other than this study.  Choosing to participate or not will have no effect on your medical care.  After finishing the survey, no attempt will be made to re-contact you. 
 
If you have any questions or concerns about this study, please contact Shannan Dixon, the PI of this study, at sdelany@som.umaryland.eduor 410-706-4713.  If you have any questions about participants’ rights as they relate to this research, please contact the Human Rights Protection Office (HRPO) for the University of Maryland at 410-706-5037 or hrpo@umaryland.edu.
 
By clicking “Next”, you are indicating that you have read the above information and agree to participate.
 
Thank you for participation.  We really appreciate your time.
 
Emily Callahan
Master’s in Genetic Counseling student, University of Maryland School of Medicine
Emily.callahan@som.umaryland.edu
 
Shannan Dixon, MS, CGC
Director, Master’s in Genetic Counseling Program
University of Maryland School of Medicine
 
 
 
 
 
 
 
 
 
 
 
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