Table 8.

Unmet needs and priorities in HLH management.

S. No.	Recommendation	Grade of evidence	Level of agreement (%)
36.	Current HLH diagnostic criteria (including updated HLH-2004) have limitations in specificity for secondary or atypical presentations, and there is a need to evaluate and validate integrated diagnostic pathways, incorporating structured scoring tools and selected genetic/functional assays, to improve diagnostic precision and reduce misdiagnosis and treatment delays.	Moderate	100% (15/15)
37.	Genetic and functional testing should be integrated into diagnostic pathways but must not delay empiric HLH therapy when clinical suspicion is high.	Low	100% (15/15)
38.	For idiopathic HLH, early empiric immunomodulatory treatment should be started in parallel with continued efforts to uncover underlying triggers to improve outcomes.	Low	100% (15/15)
39.	Where access to novel targeted therapies is limited, standardized protocols using available immunomodulatory agents and supportive care should be established, with mechanisms to facilitate access to novel agents where possible.	Low	100% (15/15)
40.	Multidisciplinary care pathways and regional care coordination, supported by diagnostic networks and the establishment of regional registries, are essential to address unmet needs and ensure timely, equitable HLH care. In particular, the current lack of a comprehensive regional registry remains a key gap, limiting visibility of the disease burden, referral patterns, and outcomes across the region.	Low	100% (15/15)

Level of agreement was calculated as the proportion of respondents selecting either “agree” or “somewhat agree.”.

HLH, hemophagocytic lymphohistiocytosis.