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Common Data Elements for Muscle Biopsy Reporting. Arch Pathol Lab Med 2016 Jan;140(1):51-65

Date

07/02/2015

Pubmed ID

26132600

Pubmed Central ID

PMC4975562

DOI

10.5858/arpa.2014-0453-OA

Scopus ID

2-s2.0-84954289035 (requires institutional sign-in at Scopus site)   20 Citations

Abstract

CONTEXT: There is no current standard among myopathologists for reporting muscle biopsy findings. The National Institute of Neurological Disorders and Stroke has recently launched a common data element (CDE) project to standardize neuromuscular data collected in clinical reports and to facilitate their use in research.

OBJECTIVE: To develop a more-uniform, prospective reporting tool for muscle biopsies, incorporating the elements identified by the CDE project, in an effort to improve reporting and educational resources.

DESIGN: The variation in current biopsy reporting practice was evaluated through a study of 51 muscle biopsy reports from self-reported diagnoses of genetically confirmed or undiagnosed muscle disease from the Congenital Muscle Disease International Registry. Two reviewers independently extracted data from deidentified reports and entered them into the revised CDE format to identify what was missing and whether or not information provided on the revised CDE report (complete/incomplete) could be successfully interpreted by a neuropathologist.

RESULTS: Analysis of the data highlighted showed (1) inconsistent reporting of key clinical features from referring physicians, and (2) considerable variability in the reporting of pertinent positive and negative histologic findings by pathologists.

CONCLUSIONS: We propose a format for muscle-biopsy reporting that includes the elements in the CDE checklist and a brief narrative comment that interprets the data in support of a final interpretation. Such a format standardizes cataloging of pathologic findings across the spectrum of muscle diseases and serves emerging clinical care and research needs with the expansion of genetic-testing therapeutic trials.

Author List

Dastgir J, Rutkowski A, Alvarez R, Cossette SA, Yan K, Hoffmann RG, Sewry C, Hayashi YK, Goebel HH, Bonnemann C, Lawlor MW

Authors

Michael W. Lawlor MD, PhD Adjunct Professor in the Pathology department at Medical College of Wisconsin
Ke Yan PhD Associate Professor in the Pediatrics department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Biopsy
Common Data Elements
Humans
National Institute of Neurological Disorders and Stroke (U.S.)
Neuromuscular Diseases
Pathology, Surgical
Research Design
United States