Inchstone Project: Parents Speak Survey 2
Help researchers recognize the small developmental steps that matter to families. This online survey invites parents and caregivers to share their loved one’s skills and experiences to support better ways of measuring development in clinical care and future clinical trials.
Inchstone Project: Parents Speak Survey 2
Small developmental steps can make a meaningful difference in everyday life. Parents Speak Survey 2 invites parents and caregivers to share their loved one’s skills and experiences, helping researchers develop better ways to recognize those changes.
This is an external study run by The Inchstone Project, not an ASXL Rare Research Endowment (ARRE) Foundation study. We are sharing this opportunity to help bring ASXL families’ experiences into this work.
Why this study is important
Developmental assessments often focus on major milestones, such as walking or talking. They can miss smaller changes that families notice and value—sometimes called “inchstones.”
The Inchstone Project is developing tools to capture these meaningful steps, especially for individuals with profound developmental disabilities. Better measurement could help researchers understand change and evaluate future treatments. This survey is not a treatment trial. See recent publications from The Inchstone Project’s earlier work.
Who can participate in this study?
The survey invites parents and caregivers of individuals with genetic conditions affecting brain development or epilepsy conditions, across a range of abilities. ASXL families are encouraged to review the study’s eligibility information when signing up.
What is required to participate in this study?
- Complete online questions about development, behavior, and family life.
- Allow approximately 2–2½ hours.
- Take breaks as needed; you have two weeks to finish.
- Use a computer, smartphone, or tablet and an email account. Medical records are not required.
The team hopes families will participate annually for five years to help assess change over time.
Participation is voluntary. Ready to participate?