Study Details
Understanding the questions parents have when they find out their child is a carrier of a genetic disease?
(IRB#: IRB_00179621)
When parents receive a letter in the mail telling them that their child is a carrier of a disease, there can be significant distress and confusion. We would like to build a tool that guides parents to the information they need, when they need it. The purpose of this study is to discover what they really need to know so that we can build a tool that matches parent needs in the state.
- All genders
- Over 18 years old
- Healthy Volunteers
- From Home
- Paid
Who can participate?
Gender: All genders
Age: Over 18 years old
Volunteers: Healthy Volunteers
Location: From Home
Will I be paid for my time?
Yes
IRB#: IRB_00179621
PI: Karen Eilbeck
Department: BIOMEDICAL INFORMATICS
Approval Date: 2024-08-31 06:00:00
Specialties: Genetic Counselor, Pediatric Genetics, Pediatric Hematology & Oncology, Pediatric Nurse Practitioner
I am Interested