FREESIAS Angelman Syndrome Endpoint Study

Roche is sponsoring a non-drug study that will help to prepare for future clinical drug trials in AS. The study will recruit about 40 children and 10 adults with AS and 20 typically developing children and will last approximately 12 months. 

The goal of the study is to establish measures, or endpoints in the following areas:

  • Expressive communication
  • Independence and self-care
  • Maladaptive behaviors
  • Sleep
  • Motor skills
  • Seizures
  • Cognition

The data obtained will serve as a reference point or baseline for future drug trials. 

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Participant Requirements

  • Child or adult diagnosed with Angelman Syndrome
  • Two visits to a study site
  • Participate in 3 home visits during a 12-month period
  • Allow a camera to be installed in the home to monitor the participant’s sleep during the home visits
  • Allow a blood sample to be taken at the start or the end of the study
  • Parent or caregiver must provide information, attend appointments and complete activities at home like surveys and questionnaires

Families will be reimbursed for travel expenses.

 

Locations

Currently there are three locations that are participating in the study.  They are located in: 

  • Illinois
  • North Carolina
  • Texas

Questions or To Enroll

If you have questions or would like to enroll in this study, call the number below. 

Trial Information Support Line
Hours of Operation: Monday – Friday 5am – 5pm PST 
Phone: 1-888-662-6728  (US and Canada only)

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