Cerebral Palsy (NECCPS)

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The North of England Collaborative Cerebral Palsy Survey - NECCPS

Cerebral palsy, though uncommon, is one of the major potential complications of prematurity and multiple pregnancy. Cerebral palsy gives rise to movement difficulties which may be associated with learning difficulties, epilepsy, hearing and vision problems.

The Basics

Data collected from: 1991

Consent required from parent? Yes. A copy of the consent form is available here.

Type of data collected: Paediatricians fill in basic neonatal dataset at diagnosis and paediatric assessment at 4-5 years. Parents are asked to fill in a lifestyle assessment questionnaire (LAQ) at age 4-5 years. Copies of these forms are available on the information for parents page.

Information for parents: Click here to see more information about the survey.

Current work:

  • Quality of life measure in young people aged 14-20 by Catherine Tuffrey.

  • Is language and communication assessment at 2-2 1/2 years a good predictor of communication skills at 5 years? Research led by Lindsay Pennington. The parents information sheet is available here. A copy of the protocol is available here.

  • SPARCLE II. Children that were interviewed during the SPARCLE study will be followed up now that funding for the second part of the study has been obtained. This will be led by Professor Allan Colver.

Newsletter

July NECCPS newsletter 2011 NECCPS Newsletter .

Share your opinions and photos with us:

We want to make the website as useful as possible for parents in the region. If you have any requests or concerns regarding the website content or pictures of your children that you are happy for us to put on our website, please email them to Mary Bythell.

2010 Annual Meeting: 9th March 2010, Lancastrian Suite, Dunston

2009 Annual Meeting: 25th March 2009, Lancastrian Suite, Dunston

2008 Annual Meeting: 11th March 2008, Lancastrian Suite, Dunston Information from the 2008 meeting, including information on learning technologies and leisure services in the North of England.

Links:

SPARCLE The Study of Participation of Children with Cerebral Palsy Living in Europe. This is a large study that is run from the University of Newcastle.

CPTalk A forum for parents of children with cerebral palsy, started by a regional mum.

Scope is a UK disability organisation whose focus is people with cerebral palsy.

Contact a Family is a UK charity for families with disabled children.

Able Needs is a website set up by a local parent to provide information for parents and carers of children with special needs.

HemiHelp is a UK based charity for people with hemiplegia and their families.

Heel and Toe Local charity for children with dyspraxia, cerebral palsy and other motor disabilities.

Get Involved

PARENT STEERING GROUP FOR RESEARCH INTO THERAPIES FOR CHILDREN WHO HAVE MOTOR DISORDERS

Interested in children’s communication, eating and drinking?

Want to influence which therapies children receive?

Want to influence the direction of research to find effective therapies?

This could be the group for you!

A group of parents meet with researchers at Newcastle University twice a year to discuss research into children’s communication and eating and drinking.

For more information see here.