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The Medical Research Council prion disease rating scale: a new outcome measure for prion disease therapeutic trials developed and validated using systematic observational studies.

Abstract:

Progress in therapeutics for rare disorders like prion disease is impeded by the lack of validated outcome measures and a paucity of natural history data derived from prospective observational studies. The first analysis of the U.K. National Prion Monitoring Cohort involved 1337 scheduled clinical assessments and 479 telephone assessments in 437 participants over 373 patient-years of follow-up. Scale development has included semi-quantitative and qualitative carer interviews, item response mo...

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Publication status:
Published

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Publisher copy:
10.1093/brain/awt048

Authors


Thompson, AG More by this author
Porter, MC More by this author
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Journal:
Brain : a journal of neurology
Volume:
136
Issue:
Pt 4
Pages:
1116-1127
Publication date:
2013-04-05
DOI:
EISSN:
1460-2156
ISSN:
0006-8950
URN:
uuid:3426a6c5-9015-4d37-98e1-3abb3db72040
Source identifiers:
422593
Local pid:
pubs:422593

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