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Caring for Children with Genetic Conditions

Caring for Children with Genetic Conditions

Recruiting
18 years and older
All

Overview

This is a survey-based study that will investigate the current use of children's books on genetic conditions by families of pediatric patients with various genetic conditions, and by genetic counselors in clinic. This survey is for primary caregivers of children with genetic conditions.

 

If interested in participating, contact:

Katherine Stevens
Phone: 207-616-8042
Email: katherine_stevens@urmc.rochester.edu

Description

This survey asks primary caregivers of children with genetic conditions questions about their family, their management of the condition, and whether they have children's books about their child's condition. Caregivers may participate regardless of whether they have such books.

Eligibility

Inclusion Criteria:
  • Be a primary caregiver/parent of a child (aged 2-17 years old) with a genetic condition and positive genetic test result; be living in the United States; be age 18 or older; be proficient in English
 

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Study details
    Rett syndrome

University of Rochester

5 November 2025

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