Thank you for considering participating in this research study.
Our three basic hypotheses are first, the nutritional status of the child before he/she became sick with anorexia, is an important factor in enabling or inhibiting the development of an eating disorder. Second, the foods selected during nutritional rehabilitation effect the pace and effectiveness of recovery. Third, life events, and minor medical issues, and stressors might accent personality traits that then act upon the genetic vulnerability to cause the disorder to appear.
Aim: The aim of the study is two-part. First, is to further develop a questionnaire/survey that can be used to examine parent’s observations that might shed light on underlying vulnerability to develop an eating disorder. Second, is to examine whether certain characteristics differ in children and families where an eating disorder develops, and children and families that develop without an eating disorder, thus called "normal/control".
Your role in the study. You are being asked to complete an online survey because you have a child who is struggling with an eating disorder, and as his/her parent or caregiver you have a unique perspective, and your observations are valuable.
The study takes approximately 30-45 minutes
If we have questions, we might email you later for clarification. If you would like a copy of our final study, please indicate it on the survey form, and we will be happy to send it to you.
Risks and Discomforts
There are three discomforts that might arise from participating in this study. First, is the time commitment. Second is the discomfort from focusing on a painful topic, and third is the potential risk to breach of confidentiality.
If you have any questions you can contact Barbara Scolnick, MD at firstname.lastname@example.org or 617-964-1807
Data including your email which is the only identifying feature will be stored in a password-protected computer only accessible to the investigators, and destroyed at the end of the research. All research data will be assigned a code. The list that links the email address to their code will be kept separately in a locked cabinet. Only the research team and the Boston University Institutional Review Board will have access to the master-code. The investigators will take appropriate care to protect the confidentiality of your private information. However, there is a slight chance that others could learn information about you from this study.
You will receive no benefit from participating in this study. This is a totally altruistic decision on your part. Your alternative is to not participate in this study.
If this survey is successful in identifying overlooked risk factors for eating disorders, children with eating disorders may benefit from your participation in this study.
You will not be paid to participate in this research study.
Taking part in this research is voluntary. You have a right to refuse to take part in this study. If you decide to be in this study you can refuse to answer any question if you wish. If you decide to be in this study and then change your mind, you can withdraw from the research. Refusal to participate will not involve any penalty or loss of benefits to which you are otherwise entitled.
If there are any new findings during the study that may affect whether or not you wish to continue to take part in the research, you will be told about them as soon as possible. The investigator may decide to stop your participation in the study without your consent. This might happen if he decides that staying in the study will be bad for you of if he decides to stop the study.
If you have any questions regarding this research of if you have a research related injury, either now or at any time in the future, please contact David I Mostofsky PhDProfessor, Department of Psychology at 617-358-2799, or email email@example.com.
You may obtain further information about your rights as a research subject by calling the BU CRC IRB Office at 617-358-6115 or firstname.lastname@example.org.
Agreement to Participate
You are not required to sign this consent form. You should be given an opportunity to ask questions about the study and have your questions answered to your satisfaction before you agree to participate. Please email us with any questions email@example.com or phone us at 617-964-1807
This questionnaire can be filled out in one sitting and can take a while. If you need or want to take a break, there are stop points along the way. The numerous submit buttons will save your responses to that point.. A reminder will come to your email with a link to complete the survey.