Angelman Syndrome Video Assessment (ASVA) Source Material Study

Launched by THE EMMES COMPANY, LLC · Dec 1, 2022

Keywords

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Gender

ALL

Eligibility criteria

• • Caregiver reports that the individual with AS has a laboratory-confirmed diagnosis of Angelman syndrome
• • Individual with AS is at least 1 year old
• • Caregiver is willing and able to provide informed consent for themselves and oversee study participation
• • Caregiver or legal guardian is willing to provide informed consent on behalf of the individual with AS
• • Caregiver is comfortable reading and speaking in English
• • Caregiver has access to a smartphone or tablet that is compatible with the study app OR caregiver has internet access and is willing to use a wi-fi only device to record and upload videos
• NT-Caregiver dyads will be eligible for inclusion if the:
• • Neurotypical individual is between 1 and 8 years of age
• • Caregiver is willing and able to provide informed consent and oversee study participation and NT individual is willing and able to provide assent, as applicable
• • Caregiver is comfortable reading and speaking in English
• • Caregiver has access to a smartphone or tablet that is compatible with the study app OR caregiver has internet access and is willing to use a wi-fi only device to record and upload videos Participant-Caregiver dyads will be excluded from the study only if they do not meet the inclusion criteria above.

Trial Officials