Parental Impact Study
A study is being carried out by Alexandria Bakos for which parents are invited to participate in a study exploring how you are impacted by having a child with Kleefstra syndrome. Please see below for the invitation letter for the study, and details of how to take part.
If you do have further questions about the study or would like to take part once you have read the letter below, please contact Alexandria Bakos by email at email@example.com
Invitation to Participate
Dear Parents and Legal Guardians,
We are asking for your participation in a study exploring how parents are impacted by having a child with Kleefstra syndrome. There is limited research about parental well-being and the parental experience of having a child with Kleefstra syndrome. Additional knowledge in this area may help genetic counselors and other healthcare professionals better understand what resources and counseling techniques may be beneficial to parents of children with Kleefstra syndrome as well as better understand the parent’s experience. This study will be carried out in the Department of Genetics and Genome Sciences at Case Western Reserve University as a part of a graduate student Master’s research project. The Institutional Review Board of Case Western Reserve University has reviewed and approved this study.
You are being asked to participate because you have or have had a child with Kleefstra syndrome. You will be one of approximately 92 participants in this study. You and your partner are permitted to participate in the study. We ask that if you both would like to participate to please fill out separate surveys and do not work together to complete the answers. Once this informed consent has been read completely and marked as read, the survey will begin. This confidential survey should take no more than 40 minutes to complete and answering this survey is completely
voluntary. If there is a question you do not wish to answer, please feel free to skip it. If you feel uncomfortable you may choose to exit the survey at any time. Once you submit the survey, we will not be able to withdraw you from the study since we will be unable to identify your survey. If you feel uncomfortable and need to speak to someone regarding your responses, please contact the health professional who diagnosed your child or, if not available, the health professional currently working with your child regarding their symptoms of Kleefstra. You do not have to take this survey. Your answers to this survey will not affect your or your child’s access to genetic or health related services and there is no penalty for not participating.
Your answers to the survey are anonymous and will be kept confidential. Your answers will not be shared with anyone, including your partner, and will be reported only as summary statistics. There are no known benefits to you for participating in this study. There is no cost to you for participating in the study and you will not be compensated for your participation. By completing the survey, you are giving your consent to participate and that you have read this form in its entirety.
If you have questions or concerns about this study, please email Alexandria Bakos at firstname.lastname@example.org or call her at (440) 554-3634.
You may also contact Dr. Suzanne DeBrosse at Suzanne.email@example.com or at (216)844-3936. If you would like to talk to someone other than the researcher(s) about concerns regarding the study; research participant’s rights; research-related injury; or human subject issues, please contact University Hospitals Case Medical Center’s Chief Medical Officer at (216) 844- 3695 or write to The Chief Medical Officer, The Center for Clinical Research, University Hospitals Case Medical Center, 11100 Euclid Avenue, Lakeside 1400, Cleveland, Ohio, 44106-7061.
Thank you for your time and participation,
Genetic Counselling Training Program
Case Western Reserve University
Assistant Professor, Pediatrics Genetics
CWRU School of Medicine
Case Western Reserve University