SURVEY CONSENT FORM
Purpose and Description
You are invited to participate in a survey as part of the DM COMPASS study. Our goal is to understand the DM community’s risk tolerance, attitudes and interests in potential therapies. As part of this study, you will be asked to complete a survey. Your participation is estimated to take approximately 20 minutes.
Risks of taking this Survey
Risks or Discomfort: The risks associated with this study are minimal. Some questions ask about your experiences living with myotonic dystrophy (DM). Thinking about or describing these experiences may cause mild emotional discomfort or distress. You may end the survey at any time.
Benefits of taking this Survey
You will not receive payment, free services, or any direct personal benefit from participating in this study. However, the information collected may help researchers better understand myotonic dystrophy and support the development of improved treatments in the future. While these efforts may benefit individuals with DM more broadly, we cannot promise that this research will result in new treatments or that you will personally benefit from participating.
Your decision about whether to participate will not affect your relationship with the Myotonic Dystrophy Foundation, your access to Foundation programs or services, or your eligibility for any current or future treatments.
Payments
You will have an opportunity to enter to win one of three $750 gift cards for your participation.
Participants’ Rights
Your participation is voluntary. You may refuse to participate or withdraw at any time without penalty or loss of benefits. You will not waive any rights if you choose not to participate or for stopping your participation in the study.
Confidentiality
All data collected will be kept confidential and securely stored. The results of this research study may be presented at internal MDF meetings, scientific or medical meetings, including MDF meetings, or published in reports, posters, or scientific journals.
Your identity and/or your personal health information will not be disclosed except as authorized by you or as required by law. Identifiable private information will be removed, and the de-identified data could be used for future research without additional consent. However, there is always some risk that even de-identified information might be re-identified.
Contact Information
- Questions about the study: Please contact Nadine Ann Skinner, Director of Evaluation and Research Programs (email: research@myotonic.org).
- Need help accessing or completing the survey: Please contact Mike Wasnock, Senior Analyst (email: mike.wasnock@siliconvalleyrg.com), or phone: (408) 920-0361 (extension 706)