Genetic Counseling Project October 1, 2021

Dear A-T Parent,

You are invited to participate in a research study that aims to learn how caregivers cope with an ataxia telangiectasia (A-T) diagnosis and how this coping has changed over time. By learning more about this, we believe it could help support families in the future who are impacted by A-T and give their practitioners guidance for recommending resources. This study is being conducted for a Boston University Genetic Counseling Program capstone project.  

The study involves a 5-10 minute survey which asks about demographics and your family’s experience with A-T. At the end of the survey, you will have the option to indicate interest in completing an interview or not. This 30-60 minute zoom interview will dive deeper into how you and your family are dealing with the diagnosis. Between 10-15 people will be selected for an interview. 

The criteria to participate are below: 

1. You are a parent/guardian that provides ongoing care for a child with ataxia telangiectasia.
2. Your child was diagnosed more than two years ago.
3. You speak English.
4. You live in the United States. 

Please click the link below to complete the survey if you are interested:

https://bostonu.qualtrics.com/jfe/form/SV_6zBw4k7p59lSAWG 

For questions or concerns regarding your rights as a research subject, you may contact the Boston University Medical Center Institution Review Board at (617) 358­-5372 or via email at medirb@bu.edu. 

If you have any questions about this study please contact Julia Schiller, the primary investigator, at any time. 

Thank you! We truly appreciate your consideration. 

Julia Schiller
Study Number H-41717
Masters in Genetic Counseling student
Boston University School of Medicine
juliams@bu.edu