Resources

A variety of resources to help clinicians, families, researchers and professional support personnel, can be found scattered through this site. These include web sites and contact details; up to date summaries of information; algorithms to help diagnosis etc. Other useful resources are detailed below.

Books

The neuronal ceroid lipofuscinoses (Batten disease). 2nd Edition.
Editors Mole, Goebel and Williams. Publication 2011. OUP
ISBN-10: 019959001X, ISBN-13: 978-0199590018. 480 pp. hardcover.
Available to order via Amazon UK currently 25% off, Amazon USA or OUP
OUP 20% off voucher (pdf file)
Book Review in J Child Neurol. 2011 Oct;26(10):1330

This new edition will be the definitive reference work for the next decade for consultation by clinicians, research scientists, diagnostic laboratories, families affected with the disease and industry planning translational research. The format is similar to the original book, and includes invaluable advice on the genetic, clinical, diagnostic, morphological, care and treatment options available. All chapters have been updated and new chapters have been written by experts in their respective fields.

The neuronal ceroid lipofuscinoses (Batten disease).
Editors Goebel, Mole and Lake. Published 1999. IOS Press
ISBN-10: 9051994818, ISBN-13: 978-9051994810. 198 pp. hardcover.
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Book Review in J Child Neurol 2000; 15; 206

This first edition described each type of NCL in detail and was used by families, carers, clinical professionals and research scientists.
"This book is the best single source of up-to-date information on neuronal ceroid lipofuscinoses and should be in the library of child neurologists, pediatric neuropathologists, and pediatric geneticists who may deal with patients suffering from these illnesses."

Special Journal volumes

Special Issue: Molecular basis of NCL
- published in Biochimica et Biophysica Acta (BBA) - Molecular Basis of Disease.
Biochim Biophys Acta vol 1762 issue 10: 849-954. 2006

Web sites and links

Orphanet

GeneReview on the NCLs

International Rare Disease Consortium

Collections

National Disease Research Interchange Biospecimens

ATCC biological resource center

European Collection of Cell Cultures