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Angelman & Rett Syndrome: Interaction and Communication

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT03720028
Recruitment Status : Unknown
Verified October 2018 by Universitaire Ziekenhuizen Leuven.
Recruitment status was:  Not yet recruiting
First Posted : October 25, 2018
Last Update Posted : October 25, 2018
KU Leuven
Information provided by (Responsible Party):
Universitaire Ziekenhuizen Leuven

Brief Summary:
We aim to describe the communicative and sensory profile of children with Angelman syndrome or Rett syndrome and their use of augmentative and alternative communication. In addition, parents are surveyed regarding parent-child interaction and access to communication support.

Condition or disease Intervention/treatment
Behavior, Child Parent-Child Relations Communication Behavioral: Observation Behavioral: Parental experiences

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Study Type : Observational
Estimated Enrollment : 20 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Parent-child Interaction and Communication in Families Who Have a Child With Rett Syndrome or Angelman Syndrome
Estimated Study Start Date : December 1, 2018
Estimated Primary Completion Date : October 1, 2020
Estimated Study Completion Date : October 1, 2020

Group/Cohort Intervention/treatment
Child w Angelman/Rett syndrome
Children with Angelman or Rett syndrome, up to 14 years of age
Behavioral: Observation
Describe communication and sensory profile using standardized tests and observations.

Parents of Children with Angelman or Rett syndrome
Behavioral: Parental experiences
Survey parents' experiences with parent-child interaction and augmentative and alternative communication.

Primary Outcome Measures :
  1. Communication profile [ Time Frame: 1 day One-time measurement ]
    Scores on language tests

  2. Parent interaction [ Time Frame: 1 day One-time measurement ]
    Scores on social tests

Information from the National Library of Medicine

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Ages Eligible for Study:   1 Year to 14 Years   (Child)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Probability Sample
Study Population
Children with complex communication needs.

Inclusion Criteria:

  • Angelman or Rett syndrome

Exclusion Criteria:

  • none

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03720028

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Katholieke Universiteit Leuven
Leuven, Vlaams-Brabant, Belgium, 3000
Sponsors and Collaborators
Universitaire Ziekenhuizen Leuven
KU Leuven
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Responsible Party: Universitaire Ziekenhuizen Leuven Identifier: NCT03720028    
Other Study ID Numbers: Snummer
First Posted: October 25, 2018    Key Record Dates
Last Update Posted: October 25, 2018
Last Verified: October 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Additional relevant MeSH terms:
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Rett Syndrome
Mental Retardation, X-Linked
Intellectual Disability
Neurobehavioral Manifestations
Neurologic Manifestations
Nervous System Diseases
Genetic Diseases, X-Linked
Genetic Diseases, Inborn
Heredodegenerative Disorders, Nervous System