One of the key objectives established by ERN-EuroBloodNet is to foster best practice sharing in Rare Hematological Diseases (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 Clinical Practice Guidelines (CPGs) and other Clinical Decision Making Tools (CDMTs) on RHD was defined aiming to achieve an accurate and reliable source of information on the best practices documents followed by the ERN-EuroBloodNet members.
A total of 117 GPGs and other CDMTs 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 CPGs and other CDMTs, but also the definition of a methodology for their classification based on the following set of domains:
a) Scope and purpose
Document shall be classified based on the objectives and clinical questions, adopting the following items:
b) Patients' involvement
Composition of the CPGs and other CDMTs development group shall be evaluated with reference to the involvement of patient advocacy organizations patients.
c) Rigour of development
Methodology adopted to develop the CPGs and other CDMTs shall be assessed according to the following scale:
A: evidence and consensus-based CPGs and other CDMTs: grading system for strength of recommendation involving assessment of the quality of evidence (study design, study quality, consistency) (e.g. GRADE, SIGN)
B: consensus-based CPGs and other CDMTs: formal consensus development techniques (e.g. Delphi method, nominal group technique)
C: expert opinion: entirely based on opinions by experts without formal consensus development techniques