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Haemophilia : the official journal of the World Federation of Hemophilia · 2024

Contrasting Approaches in the Implementation of GRADE Methodology in Guidelines for Haemophilia and Von Willebrand Disease.

СтатьяНазвание и аннотация: Перевод в очереди
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Skinner Mark W, Albisetti Manuela, Ardila Jesús, Astermark Jan, Blatny Jan, Carcao Manuel, Chowdary Pratima, Connell Nathan T, Crato Miguel, Dargaud Yesim, d'Oiron Roseline, Dunn Amy L, Escobar Miguel A, Escuriola-Ettingshausen Carmen, Gouider Emna, Harroche Annie, Hermans Cedric, Jimenez-Yuste Victor, Kaczmarek Radoslaw, Kenet Gili, Khoo Liane, Klamroth Robert, Langer Florian, Lillicrap David, Mahlangu Johnny, Male Christoph, Matsushita Tadashi, Meunier Sandrine, Miesbach Wolfgang, Nolan Beatrice, Oldenburg Johannes, O'Mahony Brian, Ozelo Margareth, Pierce Glenn F, Ramos Gloria, Recht Michael, Romero-Lux Olivia, Rotellini Dawn, Santoro Rita C, Singleton Tammuella C, Srivastava Alok, Susen Sophie, Talks Kate, Tran Huyen, Valentino Leonard A, Windyga Jerzy, Yang Renchi, Mancuso Maria Elisa, also on behalf of AICEAHAD‐APAHCDCATHNCLAHTEHCFrench CRH & MHEMOHTCCNCNBDFPEDNETUKHCDOWFH

Аннотация

INTRODUCTION: The 2024 ISTH clinical practice guideline (CPG) for treatment of congenital haemophilia, the NBDF-McMaster Guideline on Care Models for Haemophilia Management, and ASH ISTH NBDF WFH guidelines on the diagnosis and management of VWD all utilised GRADE methodology.

AIM: Discuss missed opportunities and the methodological approach of the ISTH Guideline in contrast to how GRADE was previously applied in rare diseases.

METHODS: Critically analyse the methodology of each guideline along with best practices in the use of GRADE. Where applicable, the WFH Guidelines for the Management of Haemophilia were analysed.

RESULTS: Important differentiating features in applying GRADE were identified. Where a strong evidence base is lacking, data other than those from randomized controlled trials, which may not always be justified, need to be considered, including incorporation of outcomes important to people living with the disease. Justification and stakeholder input to prioritize questions requiring a new guideline, panel composition with necessary patient participation and content expertise were also found to be significant differentiating features.

CONCLUSION: The puristic approach taken in the ISTH Guideline development process, without consideration of accepted adaptations to GRADE implementation, created a missed opportunity for progressing haemophilia care, leading to guideline recommendations that have been widely deemed invalid and obsolete by expert healthcare professionals and by those living with the condition, the very people who are expected to implement or bear the impact of the recommendations. Lessons learnt from this comparative analysis should guide future guideline development and encourage collaboration to further advance haemophilia.

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

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