Parents as Partners: A Report and Guidelines on the Investigation of Children with Developmental Delay; by Parents, for Professionals
Public Health Genetics Unit, Cambridge Genetics Knowledge Park, 2006
42 Pages Posted: 28 Mar 2011
Date Written: 2006
This document summarises the input of participants in the patient and public involvement component of the Cambridge Genetics Knowledge Park (CGKP) Learning Disability & the Interface with Genetics Project. This was an interdisciplinary project by CGKP that sought to develop expertise and services for the genetic investigation of learning disability. The document portrays the parent and carer perspective and has been created through a collaborative involvement process with families affected by learning disability.
The document is divided into four sections. The first provides a background to the project and the guidelines. The second section summarises evidence collated from families and the third section contains parent/carer recommended service changes. The final section is a set of recommended guidelines for the investigation of children with developmental delay written in a collaborative manner by the parents and carers who participated in this project.
Keywords: genetics, genetic testing, learning disability, guidelines, parents, informed consent, public involvement
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