Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families

Gillian S. Townend; Theresa E. Bartolotta; Anna Urbanowicz; Helena  Wandin; Leopold M.G. Curfs

Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families

Gillian S. Townend^*, Theresa E. Bartolotta, Anna Urbanowicz, Helena Wandin, Leopold M.G. Curfs

^*Corresponding author for this work

Research output: Book/Report › Book › Professional

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Abstract

What are the Guidelines?
The guidelines are designed for parents, carers, therapists and educators. They help by setting a baseline of good practice in developing the communication skills of people with Rett syndrome. They are a starting point for assessment, intervention and long-term management. From this detailed baseline, local and personal practice can be built.

How did we develop them?
The project called on practice and experience of people around the world, coordinated by a small group of international experts. They are consensus-based guidelines, based on available evidence gathered through systematic literature review, real-life experience and expert opinion. In total, 650 people from 43 countries participated in the project.

The project was coordinated by the Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from Rettsyndrome.org.

For questions relating to the guidelines, please contact Gill Townend: [email protected]

Original language	English
Publisher	Rettsyndrome.org
Number of pages	116
ISBN (Electronic)	978-94-6380-822-4
Publication status	Published - 2020

Keywords

Rett syndrome
Consensus-based guidelines
Augmentative and alternative communication (AAC)
Assessment
Intervention
Long term management of communication

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Rett Syndrome Communication Guidelines Handbook, full copy (116 pages)Final published version, 14 MBLicence: Unspecified
Section 1: Guiding Principles (18 pages)Final published version, 4.25 MBLicence: Unspecified
Section 2: Professional Practice (16 pages)Final published version, 2.24 MBLicence: Unspecified
Section 3: Features of Rett Syndrome & Coexisting Conditions (18 pages)Final published version, 2.89 MBLicence: Unspecified
Section 4: Strategies to Optimize Engagement (22 pages)Final published version, 3.93 MBLicence: Unspecified
Section 5: Assessment (20 pages)Final published version, 2.82 MBLicence: Unspecified
Section 6: AAC Assessment (18 pages)Final published version, 3.13 MBLicence: Unspecified
Section 7: Assessment of AAC System/Device (16 pages) Final published version, 3.6 MBLicence: Unspecified
Section 8: Intervention (36 pages)Final published version, 3.55 MBLicence: Unspecified
Appendix 1: Statements and Recommendations (28 pages)Final published version, 2.87 MBLicence: Unspecified

Cite this

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title = "Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families",

abstract = "What are the Guidelines?The guidelines are designed for parents, carers, therapists and educators. They help by setting a baseline of good practice in developing the communication skills of people with Rett syndrome. They are a starting point for assessment, intervention and long-term management. From this detailed baseline, local and personal practice can be built.How did we develop them?The project called on practice and experience of people around the world, coordinated by a small group of international experts. They are consensus-based guidelines, based on available evidence gathered through systematic literature review, real-life experience and expert opinion. In total, 650 people from 43 countries participated in the project. The project was coordinated by the Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from Rettsyndrome.org.For questions relating to the guidelines, please contact Gill Townend: [email protected]",

keywords = "Rett syndrome, Consensus-based guidelines, Augmentative and alternative communication (AAC), Assessment, Intervention, Long term management of communication",

author = "Townend, {Gillian S.} and Bartolotta, {Theresa E.} and Anna Urbanowicz and Helena Wandin and Curfs, {Leopold M.G.}",

note = "All affiliations G. Townend: - MHeNs - Kindergeneeskunde - Rett Expertise Centre Netherlands - Governor Kremers Centre",

year = "2020",

language = "English",

publisher = "Rettsyndrome.org",

address = "United States",

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T1 - Rett Syndrome Communication Guidelines

T2 - A handbook for therapists, educators and families

AU - Townend, Gillian S.

AU - Bartolotta, Theresa E.

AU - Urbanowicz, Anna

AU - Wandin, Helena

AU - Curfs, Leopold M.G.

N1 - All affiliations G. Townend: - MHeNs - Kindergeneeskunde - Rett Expertise Centre Netherlands - Governor Kremers Centre

PY - 2020

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N2 - What are the Guidelines?The guidelines are designed for parents, carers, therapists and educators. They help by setting a baseline of good practice in developing the communication skills of people with Rett syndrome. They are a starting point for assessment, intervention and long-term management. From this detailed baseline, local and personal practice can be built.How did we develop them?The project called on practice and experience of people around the world, coordinated by a small group of international experts. They are consensus-based guidelines, based on available evidence gathered through systematic literature review, real-life experience and expert opinion. In total, 650 people from 43 countries participated in the project. The project was coordinated by the Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from Rettsyndrome.org.For questions relating to the guidelines, please contact Gill Townend: [email protected]

AB - What are the Guidelines?The guidelines are designed for parents, carers, therapists and educators. They help by setting a baseline of good practice in developing the communication skills of people with Rett syndrome. They are a starting point for assessment, intervention and long-term management. From this detailed baseline, local and personal practice can be built.How did we develop them?The project called on practice and experience of people around the world, coordinated by a small group of international experts. They are consensus-based guidelines, based on available evidence gathered through systematic literature review, real-life experience and expert opinion. In total, 650 people from 43 countries participated in the project. The project was coordinated by the Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from Rettsyndrome.org.For questions relating to the guidelines, please contact Gill Townend: [email protected]

KW - Rett syndrome

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ER -

Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families

Abstract

Keywords

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