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McMaster RARE‐Bestpractices clinical practice guideline on diagnosis and management of the catastrophic antiphospholipid syndrome
Author(s): ,
K. Legault
Affiliations:
McMaster University, Hamilton, Canada
Correspondence: Kimberly Legault, A3‐14, Juravinski Hospital, 711 Concession Street, Hamilton, ON L8V 1C3, Canada|Tel.: +1 905 521 2100 x43778|E‐mail: legauk2@mcmaster.ca
,
H. Schunemann
Affiliations:
McMaster University, Hamilton, Canada
,
C. Hillis
Affiliations:
McMaster University, Hamilton, Canada
,
C. Yeung
Affiliations:
McMaster University, Hamilton, Canada
,
E. A. Akl
Affiliations:
McMaster University, Hamilton, Canada. American University of Beirut, Beirut, Lebanon
,
M. Carrier
Affiliations:
University of Ottawa, Ottawa, Canada
,
R. Cervera
Affiliations:
University of Barcelona, Barcelona, Spain
,
M. Crowther
Affiliations:
McMaster University, Hamilton, Canada
,
F. Dentali
Affiliations:
Insubria University, Insubria, Italy
,
D. Erkan
Affiliations:
Weill Cornell Medicine College, New York, USA
,
G. Espinosa
Affiliations:
University of Barcelona, Barcelona, Spain
,
M. Khamashta
Affiliations:
King's College London, London, UK
,
J. J. Meerpohl
Affiliations:
Cochrane Germany, Medical Center – University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany
,
K. Moffat
Affiliations:
McMaster University, Hamilton, Canada. Hamilton Regional Laboratory Medicine Program, Hamilton, Canada
,
S. O'Brien
Affiliations:
Nationwide Children's Hospital, Columbus, USA
,
V. Pengo
Affiliations:
University of Padova, Padua, Italy
,
J. H. Rand
Affiliations:
Weill Cornell Medicine College, New York, USA
,
I. Rodriguez Pinto
Affiliations:
Hospital Clínic, Barcelona, Spain
,
L. Thom
Affiliations:
Oxford, UK
A. Iorio
Affiliations:
McMaster University, Hamilton, Canada
ISTH Academy. Legault K. Aug 2, 2018; 227420
Kimberly Legault
Kimberly  Legault

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Background
The McMaster RARE‐Bestpractices project group selected the catastrophic antiphospholipid syndrome (CAPS) for a pilot exercise in guideline development for a rare disease.
Objectives
The objectives of this exercise were to provide a proof of principle that guidelines can be developed for rare diseases and assist in clinical decision making for CAPS.
Patients/Methods
The GIN‐McMaster Guideline Development checklist and GRADE methodology were followed throughout the guideline process. The CAPS guideline was coordinated by a steering committee, and the guideline panel was formed with representation from all relevant stakeholder groups. Systematic reviews were performed for the key questions. To supplement the published evidence, we piloted novel methods, including use of an expert‐based evidence elicitation process and ad hoc analysis of registry data.
Results
This paper describes the CAPS guideline recommendations, including evidence appraisal and discussion of special circumstances and implementation barriers identified by the panel. Many of these recommendations are conditional, because of subgroup considerations in this heterogeneous disease, as well as variability in patient values and preferences.
Conclusions
The CAPS clinical practice guideline initiative met the objective of the successful development of a clinical practice guideline in a rare disease using GRADE methodology. We expect that clinicians caring for patients with suspected CAPS will find the guideline useful in assisting with diagnosis and management of this rare disease.
Keyword(s)
antibodies, antiphospholipid, antiphospholipid syndrome, practice guideline, rare diseases, thrombosis
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