Questionnaire
As part of the preparatory work for the International Alloimmune Conference on HDFN, a questionnaire has been created. The aim is to systematically map current international practice variations in the screening, diagnosis and management of HDFN, while identifying underlying rationales and constraints of these differences. If you have not received an invitation to participate in this questionnaire but are willing to do so: please contact us through alloconference@lumc.nl.
Hemolytic disease of the fetus and newborn (HDFN) remains a rare but potentially severe condition, requiring close collaboration between laboratory specialists, obstetricians, fetal medicine specialists, and neonatologists. Despite major advances in screening, diagnostics, and treatment, substantial variation in clinical practice persists worldwide across the antenatal and postnatal continuum of care.
Practice variation has already been observed in:
- the DIONYSUS study, which highlighted differences in referral patterns, antenatal monitoring and intervention strategies across centers.
de Winter et al., 2024 https://pubmed.ncbi.nlm.nih.gov/39527958/
de Winter et al., 2025 https://pubmed.ncbi.nlm.nih.gov/39792381/ - recent Delphi work led by Hiba Mustafa, which demonstrated a lack of global consensus on several key aspects of HDFN management.
Mustafa et al., 2025 https://pubmed.ncbi.nlm.nih.gov/39547350/ - recent Delphi work in Canada, where substantial variation in HDFN care was identified and increased national collaboration was highlighted as a necessary first step towards reducing variability.
Lieberman et a., https://pubmed.ncbi.nlm.nih.gov/40882839/
Lieberman et al., https://pubmed.ncbi.nlm.nih.gov/41173561/
VanderMeulen et al., https://pubmed.ncbi.nlm.nih.gov/40651573/ - the study by Cecile Toly-Ndour et al., focusing on Europe-wide variability in the use of non-invasive fetal RhD genotyping and RhD prophylaxis strategies.
Toly-Ndour et a., https://onlinelibrary.wiley.com/doi/abs/10.1111/voxs.12617 - the review of Frederik Bench Clausen et al., highlighting differences in the implementation of diagnostic tools, fetal genotyping strategies, and antenatal monitoring approaches in HDFN care, and discussing the importance of protocol alignment across centers.
Thorup et al., https://pubmed.ncbi.nlm.nih.gov/40973699/
The purpose of the questionnaire and the in-person conference is therefore:
- to inform a structured discussion during the conference, ultimately contributing to a barriers and facilitators analysis and, in the longer term, to international consensus building on topics for which so far no consensus has been reached.
- to confirm where and why practices differ
- to explore the underlying rationales, constraints, and guiding principles behind these differences, andto confirm where and why practices differ,