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Developing a Pediatric Health Survey at Massachusetts General Hospital

What's the study about?

Primary caregivers are asked to participate in a survey about the health of individuals with Autism Spectrum Disorder (ASD). Our survey collects information on the social, emotional, and physical health of the individual with ASD. This information will be used to create a standardized health instrument for doctors everywhere to better assess the health of their pediatric patients. We need to accurately measure the health of all individuals, and there is a lack of population-specific tools available. Creating such an instrument will provide a barometer of the current state of health for specific pediatric populations and hold use in future research. Our goal is to create an instrument that directly assesses and accurately measures health in a specific patient population.

Who can participate?

– You must be the primary caregiver of an individual with ASD (and the individual must be
<22 years of age and not have a diagnosis of Down syndrome) - You, the caregiver, must be ≥ 18 years of age, be fluent in written and spoken English, and be able to read and provide informed consent. - Participation is completely voluntary, and you have the right to withdraw at any time.

What will participants be doing?

Primary caregivers will complete a survey about the health of the individual with ASD. The survey is virtual and will take around 45 minutes to complete. You will be reimbursed for your time with a $25 gift card.

Why is this important?

Accurate measures of health allow for the proper treatment and the promotion of wellbeing for all people. Understanding the health of individuals with ASD will help us to create a precise and effective health instrument for families in the future.

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