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Interest Form: Screening for CVI in AS

Thank you for your interest in participating in the Screening for Cerebral Visual Impairment (CVI) in Angelman Syndrome study at Boston Children's Hospital!

This study aims to better understand the prevalence of CVI in individuals with Angelman syndrome. CVI affects how the brain processes visual information and has been linked to epilepsy and other neurodevelopmental disorders.

We would greatly appreciate your participation. Your involvement would include a one-time remote visit.

What to expect:

Copy of genetic testing: You will be asked to provide the study team with your child's genetic testing results that confirm a diagnosis of Angelman syndrome.
- If your child is already participating in the Angelman Syndrome Natural History Study, we likely have these results on file.
Informed consent: You will review and sign the informed consent form before the virtual study visit.
30-minute virtual visit: The study visit will be conducted remotely via phone or Zoom. During this time, you (the caregiver of an individual with Angelman syndrome) will answer questions about your child's visual health and behaviors.

After the study visit:

You will receive your child's CVI screening results following the visit.
If your child screens positive for CVI, we will provide educational resources and support materials.

If you have any questions about this study, please feel free to reach out to Emma Bauschard at emmabauschard@childrens.harvard.edu.

Email address

* must provide value

Are you the legal caregiver of the individual with Angelman syndrome?

* must provide value

Yes

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Do you live in the US?

* must provide value

Yes

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City and country of residence

* must provide value

City/town

* must provide value

State

* must provide value

Do you have access to your child's genetic testing report(s) confirming an Angelman syndrome diagnosis?

* must provide value

Yes

Unsure

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What is your child's molecular subtype of Angelman syndrome?

* must provide value

Deletion

Mutation

Uniparental disomy (UPD)

Imprinting defect (ICD)

Unknown

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Does your child have a formal CVI diagnosis?

* must provide value

Yes

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Is your child ambulatory (able to walk)?

* must provide value

Yes - walking independently and/or with support

No - non-ambulatory

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Has your child ever participated in the Angelman Syndrome Natural History Study?

* must provide value

Yes

Unknown

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Which Natural History Study site is your child enrolled at?

Monday

Tuesday

Wednesday

Thursday

Friday

Morning (8 AM - 12 PM)

Afternoon (12 PM - 5 PM)

Evening (5 PM - 7 PM)

Optional: Please add any questions or comments.

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