This NIH-funded research study aims to understand how to best support caregivers of children with rare neurogenetic conditions via telehealth. Eligible participants may receive free resources, evidence-based treatments by trained therapists, and/or peer-to-peer coaching by other rare disorder caregivers.
Participants are asked to complete forms and questionnaires about their experiences and are compensated up to $100 for their time.
Please note: Because this is a research study, participants do not select which type of support they will receive. All resources are evidence-based and accessible from home, without any travel. Participants may stop the study at any time without penalty.
- Caregiver (age 18+) of a child ages 2-17
- Child must have a documented neurogenetic condition typically associated with intellectual disability and/or developmental delays; condition may not be neurodegenerative in nature
- Caregiver must reside in the US and be fluent in English
- Additional eligibility criteria may apply.
More Information & To Participate
More information can be found on the study website.
Send questions or interest in participation to email@example.com.
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.