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Development of a suspicion index to aid diagnosis of Niemann-Pick disease type C

Frits Wijburg, Frederic Sedel, Mercedes Pineda, Chris Hendriksz, Michael Collingwood Fahey, Mark Walterfang, Marc C Patterson, James Edmond Wraith, Stefan Kolb

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Niemann-Pick disease type C (NP-C) is a rare, autosomal recessive lysosomal lipid storage disorder that is invariably fatal. NP-C diagnosis can be delayed for years due to heterogeneous presentation; adult-onset NP-C can be particularly difficult to diagnose. We developed a Suspicion Index tool, ranking specific symptoms within and across domains, including family members who have NP-C, to provide a risk prediction score to identify patients who should undergo testing for NP-C.
Original languageEnglish
Pages (from-to)1560 - 1567
Number of pages8
JournalNeurology
Volume78
Issue number20
DOIs
Publication statusPublished - 2012

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