2018
DOI: 10.1111/jth.14192
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McMaster RARE‐Bestpractices clinical practice guideline on diagnosis and management of the catastrophic antiphospholipid syndrome

Abstract: 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 guidelin… Show more

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Cited by 104 publications
(116 citation statements)
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“…Besides the effectiveness of intervention, the forming of recommendations is based on the severity of the disease, patient willingness, safety, and economics [4]. See Tables 1 and 2 [4,6].…”
Section: Grading the Evidences And Recommendationsmentioning
confidence: 99%
“…Besides the effectiveness of intervention, the forming of recommendations is based on the severity of the disease, patient willingness, safety, and economics [4]. See Tables 1 and 2 [4,6].…”
Section: Grading the Evidences And Recommendationsmentioning
confidence: 99%
“…5,6 Admittedly, the authors comment on "the main challenge in developing this guideline was the low certainty of evidence." 5 Hence, even our best attempt at finding cohesion and helpful treatment recommendations for this malignant benign hematologic disease is bracketed by the absence of certainty. This can be tremendously anxiety-provoking for the physician caring for the patient.…”
Section: Introductionmentioning
confidence: 99%
“…The prevalence of CAPS is unclear but it seems to account for less than 1% of cases of antiphospholipid antibody syndrome . CAPS is classified as a rare disease, defined by the European Union as a condition with a prevalence of less than 1 in 2000 and has a mortality rate as high as 50% . A recent best practice guideline for CAPS highlights the difficulty in making treatment recommendations given insufficient primary evidence, absence of randomized trials, and apprehension about making “weak” recommendations that could pose a barrier to treatment funding .…”
mentioning
confidence: 99%
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“…
As apheresis providers, we are very interested in actively collaborating with multidisciplinary care teams that refer patients for our procedures. We read with interest the recently published McMaster RARE-Bestpractices clinical practice guideline on the diagnosis and management of catastrophic antiphospholipid syndrome (CAPS) [1]. However, the clinical practice guideline had several shortcomings that call into question the authors' conclusion that therapeutic plasma exchange (TPE) should be used as first-line therapy.
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mentioning
confidence: 99%