Retrospective study examining the differences in vocalizations of babies and toddlers with Rett compared to same age peers

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Updated on 15 July 2022
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Summary

Retrospective study examining the differences in vocalizations of babies and toddlers with Rett compared to same age peers: We are looking to recruit children and their parent(s) to participate in a study examining the early speech development of infants and toddlers later diagnosed with Rett syndrome, compared to girls their age with no diagnosis of rett syndrome.  
You and your child's participation in this study will take no more than 2 sessions.  The first session will last around 1 hour, and the second session will last aroudn 1 hour.  Both sessions will be conducted by either telephone or video-chat (i.e. Zoom).
Parent(s) will be asked to share home video recordings (from a cellphone or camera) taken of their daughter between 6-18 months of age.  Parent(s) will also be asked to answer interview quesitons regarding their daughter's early development.

Description

The purpose of this study is to observe the early sound development and social communication of infants and toddlers diagnosed with Rett syndrome compared to girls of their same age without Rett syndrome. Thus far, limited research has been done on the early speech and language development of females diagnosed with Rett syndrome, prior to the regression of skills. Identifying potential differences in early vocal development of females later diagnosed with Rett syndrome could provide more information for earlier detection of this genetic disorder. 

Details
Condition Rett Syndrome, congenital varietyRett syndrome, Cdkl5-related, Rett syndrome, preserved speech varietyRett syndrome, atypical
Clinical Study IdentifierTX253203
Last Modified on15 July 2022

Eligibility

 Yes No Not Sure

Inclusion Criteria

Inclusionary: Females between the ages of 4-10, with or without a diagnosis of Rett syndrome. Participants must be able to provide video recordings of the participating child between 6 to 18 months of age

Exclusion Criteria

Children with a diagnosis of any other developmental disorders. Families who are not able to provide videos of the participating child between the ages of 6 to18 months. participate in the interview portion of the study (i.e., phone or computer they could use zoom on). For any child who is an age matched peer, they can not report any previous speech or language issues (i.e., late talker, speech sound impairments, language delay/disorder, hearing impairment). Females with a hearing loss or hearing impairment
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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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