What will happen in the study?
If you (a participant 18 years and older) or your child qualifies and you decide to take part in this study, you will complete 2 projects and be in this research study for 12 months or 1 year.
During project 1, participants and parents/legal guardians of participants will complete health related quality of life (HRQoL) questionnaires. Project 2 involves providing feedback for a BTHS-specific symptom checklist.
Both projects will occur over the Internet.
Participants/parents/legal guardians will complete questionnaires 3 different times, 6 months apart, during a 12-month period (at 0 months, 6 months, 12 months). The questionnaires, completed over the Internet at home, will gather your beliefs about you or your child’s HRQoL, anxiety and depressed mood.
Participants/parents/legal guardians will take part in a focus group with a group of clinical experts. The goal of this focus group is to review a BTHS-specific checklist, which can be used to report critical symptoms and side effects to clinicians, and identify gaps in patient care and provide feedback about potential solutions.
All communications and feedback will be done over email.
This focus group will occur during the 12-month study period.
You, as a participant or as a parent/guardian, will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.