RTI International and the University of North Carolina at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
This research study is currently seeking male and female children that have a premutation or full mutation Fragile X (including mosaic) and meet the following criteria:
- Age 0–5.
- Born in North Carolina.
- Lived in North Carolina between the ages of 0 and 3 years.
- Live in a home where English is the primary language spoken.
What to Expect
Research study activities for qualified children and their parents include:
- Home Visits: Depending on the child’s age, there will be 1–3 home visits (developmental assessments) with you and your child, each taking 2–3 hours:
- At enrollment
- Age 3
- Age 5
- Summary Reports: After each visit, you will receive a brief summary report about your child’s development plus a $50 gift card for your time.
- Questionnaires: Parents will be asked to complete some questionnaires (approx. 1–2 hours).
The following is a list of some of the assessments and questionnaires that will be included in the study:
- Bayley-3/SB-5 (50 mins)
- PDMS-2 (30–45 mins)
- AOSI (up to 18 months) 20 mins/ADOS (45–60 mins)
Parent Report Questionnaires: Questionnaires will be sent ahead of time so that parents have plenty of time to complete.
- Vineland Adaptive Behavior Scales, Third Edition (20 mins)
- Sensory Profile, Second Edition (10–20 mins)
- Rothbart Temperament Very Short Forms (10 mins)
- Medical Outcomes Study-Social Support Survey (5 mins)
- Feeding Flock Assessment. (1–2 surveys, 10–20 mins)
- Sleep Questionnaire (5 mins)
- Family Demographics including FX status (5 mins, 1st visit only)
- Behavior Rating Inventory of Executive Function (BRIEF) (15 mins)
- State-Trait Anxiety Inventory (10 mins)
- Parenting Stress Index (PSI), Fourth Edition: Short Form (10 mins)