PIND

Progressive Intellectual and Neurological Deterioration (PIND) in Children (including Creutzfeldt-Jakob Disease).      

Lead investigator 

Dr. Chris Verity
Consultant Paediatric Neurologist
Addenbrooke’s Hospital
Hills Road
Cambridge
CB2 0QQ

Overview

• Active prospective surveillance of UK children with progressive intellectual and neurological deterioration (PIND) commenced in May 1997.
• The main aim is to determine whether or not any child has developed variant Creutzfeldt Jakob disease (vCJD).
• vCJD has appeared in patients as young as 12 years of age and could occur in younger children.
• Although paediatric cases have not appeared since 2001, vCJD has not gone away.
• As the clinical presentation of vCJD is not typical of classical CJD and could be different in children, the aim is to detect suspected cases by looking at a broader group of conditions. This group needs to be large enough to include all possible cases of CJD hence the need to perform surveillance for all children with PIND.

Duration: May 1997 to April 2012

Funding: Department of Health.

Ethical approval: Approved by Addenbrooke’s NHS Trust and the HPA     

Study contact details:

Ms. A. M. Winstone, Research Nurse/ Mrs. L. Stellitano, Research Coordinator
c/o Paediatric Administration Office
Box 267
Addenbrooke’s Hospital
Hills Road
Cambridge
CB2 0QQ

Email: Lesley Stellitano and Anne Marie Winstone                                                    

Further information    

• Protocol Card (PDF, 99KB, 3 pages)

Support groups:

1. Creutzfeldt-Jakob Disease Support Network: Birchwood, Heath Top, Ashley Heath, Market Drayton, TF9 4QR.
2. Batten Disease Family Association: c/o Heather House, Heather Drive, Tadley, Hampshire, RG26 4QR. Tel:0791 4060742
3. The Society for Mucopolysaccharide Diseases: MPS House, Repton Place, White Lion Road, Amersham, Bucks, HP7 9LP.
4. Climb: (formerly the Research Trust for Metabolic Diseases in Children (RTMDC.), The Quadrangle, Crewe Hall, Weston Road, Crewe, CW2 6UR.
5. ALD Family Support Trust: 30-32 Morley House, 320 Regent Street, London, W1R 5AB.
6. Niemann Pick Disease Group: Kingslaw House, East Brae, East Wemyss, Fife KY1 4RS, Scotland.