Project Wellcast

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.

Participation

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. 

Eligibility

• Caregiver (age 18+) of an individual ages 2-35
• Individual 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 wellcast@purdue.edu.  

The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.