The A-T Children’s Project is helping to recruit for a genetic counseling capstone research project. Julia Schiller is a genetic counseling masters student at Boston University School of Medicine. We are excited that she has chosen A-T for her study because it will help raise awareness about A-T in the genetic counselor population. Please find the formal recruitment letter, criteria to participate and link to the survey below.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:
- You are a parent/guardian that provides ongoing care for a child with ataxia telangiectasia.
- Your child was diagnosed more than two years ago.
- You speak English.
- 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