Caregivers Asked to Help in Adapting Tool ‘Critical’ to Therapy Trials

Caregivers Asked to Help in Adapting Tool ‘Critical’ to Therapy Trials

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Caregivers Asked to Help in Adapting Tool ‘Critical’ to Therapy Trials

The nonprofit Rett Syndrome Research Trust (RSRT) and Duke University’s Center for Health Measurement are asking Rett syndrome caregivers to help with a study aiming to adapt and validate a tool that could allow researchers to better understand patient responses to therapies being testing in clinical trials. The tool — called Observer Reported Communications Ability (ORCA) — is a comprehensive questionnaire to assess a person’s communication ability and changes over time. It was developed for Angelman syndrome, a…

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