Preferences of information dissemination by parents and patients affected by DSD
November 30, 2016
Seeking patients with a difference of sexual differentiation and parents of children with a difference of sexual differentiation to take part in a research study! Participation in the survey is voluntary and you may decide at any point not to answer specific questions or submit the survey.
I am a genetic counseling student at the University of Arkansas for Medical Sciences (UAMS) seeking volunteers to participate in a research study. This study is meant to learn what information patients who have a condition that affects reproductive tract development, which is sometimes called a difference of sex development(DSD) or intersex, and their parents find necessary during a specific period following a diagnosis. These times are:
1) at the time of diagnosis;
2) within one year of diagnosis; and
3) after one year of being diagnosed.
By learning about what information patients with a DSD and their parents want to have we hope to improve the experiences of families diagnosed with aDSD.
Participants are asked to fill out a one-time online survey that will take about 20-30 minutes to complete. The survey questions will be mainly about how patients/parents would have liked to get information about their or their child’s diagnosis. We will also ask when they would have liked this information. This study has been approved by the UAMS IRB (IRB# 205868)
The survey responses will be anonymous and there will be no way for us to link your contact information to your survey responses. The final question will ask you if you’d like to be contacted for future studies. If so, you will be asked to provide contact information. This contact information will not be associated with your survey responses. Certain parties such as the UAMS IRB, other institutional oversight offices, and the Office for Human Research Protections (OHRP) may inspect the records.
We do not think there will be any risks to you if you participate in this study. There are no direct benefits if you take this survey, but we hope that this study will help doctors and other health care providers to provide better care and information for their patients diagnosed with a DSD.
If you are over the age of 12, have been diagnosed with a DSD by a medical professional or has a child diagnosed with a DSD by a medical professional, are able to read and speak English, and wish to participate in our online study, please click on the survey link below. By clicking on the survey link, you acknowledge that you have read the information above and voluntarily consent/assent to participate in the study. Participants ages 18 and older will have the option to leave contact information if interested in being contacted for future studies. This contact information will not be associated with survey answers.
Survey Link: https://www.surveymonkey.com/r/DSDSurvey3
Thank you for your time and for taking part in our study! If you have any questions or concerns, please contact Samantha Cassisi at scassisi@uams.edu. Alternatively, you may contact the UAMS IRB at 501-686-5667.
Sincerely,
Samantha Cassisi, B.S.
University of Arkansas for Medical Sciences
Genetic Counseling Master’s Program
Class of 2017