One of the key objectives established by ERN-EuroBloodNet is to foster best practice sharing in RHD by creating a comprehensive public repository of reliable evidence based guidelines, ranging from prevention, diagnostic tests and treatments to the organisation of patient-centred management in multidisciplinary teams.
In this context, during the first year of ERN-EuroBloodNet implementation, a protocol for the creation of the repository of reliable guidelines and recommendations on RHD was defined aiming to achieve an accurate and reliable source of information on the guidelines and recommendations followed by the ERN-EuroBloodNet members. The repository of guidelines and recommendations will serve as a central platform for sharing best practices, facilitating timely, effective and efficient translation of research results into patient oriented strategies at the individual and public health levels and provide professionals, patients, and policy makers with the best and most up to date information.
As result, a total of 117 Guidelines and recommendations have been compiled for the six subnetworks through a) the input from ERN-EuroBloodNet subnetwork coordinators and b) Questionnaire conducted among ERN-EuroBloodNet members.
List of international guidelines/recommendations compiled for RHD (RBC: Red blood cell diseases subnetwork, BMF: Bone marrow failures subnetwork, HH-Iron: Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis subnetwork, Bleed-Coag: Bleeding and coagulation subnetworks, Lymph: Lymphoid malignancies subnetwork, Myel: Myeloid malignancies subnetwork.
ERN-EuroBloodNet identified as a high priority not only the generation of a comprehensive repository of Clinical Practice Guidelines (CPGs), but also the definition of a methodology for their classification based on quality domains and assessment of real translation into clinical practice with the final aim to, not only support guideline development when lacking, but also assess their implementation in the different EU Member States.
Accordingly, ERN-EuroBloodNet defined the set of domains on which the guidelines and recommendations compiled shall be classified:
a)Scope and purpose
Document shall be classified based on the objectives and clinical questions, adopting the following items:
Composition of the guideline / recommendation development group shall be evaluated with reference to the involvement of patient advocacy organizations patients.
c)Rigour of development
Methodology adopted to develop the guideline / recommendation shall be assessed according to the following scale.
Guidelines / recommendations were developed adopting a grading system for strength of recommendation involving assessment of the quality of scientific evidence. The most commonly adopted systems include GRADE (Grades of Recommendation Assessment, Development and Evaluation) or SIGN (Scottish Intercollegiate Guidelines Network). Briefly, these systems involve a systematic review of the literature and synthesis of evidence with assessment of the quality of scientific evidence based on study design (i.e. randomized clinical trials, case-control or cohort studies, non-analytic studies, e.g. case reports, case series), study quality and consistency across study. Recommendations were ranked based on the strength of supporting evidence. These approaches may or may not be explicitly coupled with formal consensus development techniques (e.g. Delphi method, nominal group technique).
guidelines / recommendations were developed based on consensus among experts adopting formal consensus development techniques without including a systematic review of the literature and synthesis of evidence and a grading for strength of recommendation. Formal consensus development techniques include the Delphi method or nominal group technique. Briefly, these communication techniques are aimed at providing an unbiased and independent process of consensus within a panel of experts through the use of questionnaires and structured face-to-face meetings addressing key clinical questions relevant to the guideline / recommendation purpose.
guidelines / recommendations were entirely based on opinion by a variable number of experts without systematic review of the literature and formal consensus development techniques.
International guidelines and recommendations endorsed by ERN-EuroBloodNet will be publicly available very soon searchable by disease, topic, involvement of patients and quality of evidence and consensus approach.