International NCL (Batten Disease) Registry

Lead Investigator

Dr Ruth E Williams
Consultant Paediatric Neurologist
Children's Neurosciences Centre,
Newcomen Centre at St Thomas',
Staircase D South Wing,
St Thomas' Hospital
Westminster Bridge Road
London SE1 7EH

tel:  0207 188 3998
Fax: 0207 188 4629
mobile: 07766254206

email: ruth.williams@gstt.nhs.uk

Case Definition

Any child or adult with a genetically confirmed diagnosis of one of the Neuronal Ceroid Lipofuscinoses (CLN1, CLN2, CLN3, CLN4, CLN5, CLN6, CLN7, CLN8, CLN10, CLN11, CLN12, CLN13, CLN14).  Please do contact me if you unsure in order to discuss diagnostic investigations.

Please notify cases already known to you and newly diagnosed cases as they arise.