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Predictors of immune tolerance induction success in 231 children with severe hemophilia A with high-titer inhibitors – lessons learned from the PedNet prospective cohort study

Carcao, Manuel ; Königs, Christoph ; Andersson, Nadine G. LU ; de Kovel, Marloes ; de Boer-Verdonk, Elsbeth ; Motwani, Jayashree ; Blatny, Jan ; Olivieri, Martin ; van den Berg, Marijke and Fischer, Kathelijn (2025) In Journal of Thrombosis and Haemostasis 23(10). p.3134-3147
Abstract

Background: Previously untreated patients with severe hemophilia A exposed to factor (F)VIII are at risk of developing high-titer inhibitors. Traditionally, such children were tried on immune tolerance induction (ITI). With availability of nonfactor therapies, recommendations regarding whether to continue trying ITI and how are lacking. Objectives: To provide data to address these questions, we reviewed the experience of ITI in Pediatric Network (PedNet) centers. Methods: The outcomes of 231 previously untreated patients with severe hemophilia A and high-titer inhibitors to FVIII, who were followed over a 20-year period and underwent ≥1 course of ITI, were reviewed. Results: The success of the first course of ITI was predicted by... (More)

Background: Previously untreated patients with severe hemophilia A exposed to factor (F)VIII are at risk of developing high-titer inhibitors. Traditionally, such children were tried on immune tolerance induction (ITI). With availability of nonfactor therapies, recommendations regarding whether to continue trying ITI and how are lacking. Objectives: To provide data to address these questions, we reviewed the experience of ITI in Pediatric Network (PedNet) centers. Methods: The outcomes of 231 previously untreated patients with severe hemophilia A and high-titer inhibitors to FVIII, who were followed over a 20-year period and underwent ≥1 course of ITI, were reviewed. Results: The success of the first course of ITI was predicted by pre-ITI peak inhibitor titers (PITs), a family history of inhibitors, high-risk F8 gene variants, and the start of ITI within 10 months of inhibitor diagnosis. Pre-ITI PITs were a strong predictor of eventual ITI success with 1 or more ITI courses: 76.4% of those with pre-ITI PITs of 5 to 39 Bethesda Units (BUs) achieved tolerance (median, 0.72 years) vs 70.9% of those with pre-ITI PITs of 40 to 200 BU (median, 2.1 years) vs 42.1% of those with pre-ITI PITs of >200 BU (median, 5.1 years). A PIT of >200 BU during the first course of ITI was a strong predictor of ultimately failing ITI. The ITI regimen, whether administered daily or nondaily at a high or low dose, was not a predictor of ITI success with the first course of ITI. Conclusion: These predictors of success may be used to decide whether and how to initiate ITI when nonreplacement prophylaxis is available.

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author
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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
alloantibodies against FVIII, hemophilia A, immune tolerance induction, inhibitor, tolerance
in
Journal of Thrombosis and Haemostasis
volume
23
issue
10
pages
14 pages
publisher
Elsevier
external identifiers
  • pmid:40706963
  • scopus:105013147076
ISSN
1538-7933
DOI
10.1016/j.jtha.2025.07.010
language
English
LU publication?
yes
id
90adfbe7-fcaa-4efd-89ba-e76fd29edbf7
date added to LUP
2026-01-08 11:02:02
date last changed
2026-01-08 11:02:48
@article{90adfbe7-fcaa-4efd-89ba-e76fd29edbf7,
  abstract     = {{<p>Background: Previously untreated patients with severe hemophilia A exposed to factor (F)VIII are at risk of developing high-titer inhibitors. Traditionally, such children were tried on immune tolerance induction (ITI). With availability of nonfactor therapies, recommendations regarding whether to continue trying ITI and how are lacking. Objectives: To provide data to address these questions, we reviewed the experience of ITI in Pediatric Network (PedNet) centers. Methods: The outcomes of 231 previously untreated patients with severe hemophilia A and high-titer inhibitors to FVIII, who were followed over a 20-year period and underwent ≥1 course of ITI, were reviewed. Results: The success of the first course of ITI was predicted by pre-ITI peak inhibitor titers (PITs), a family history of inhibitors, high-risk F8 gene variants, and the start of ITI within 10 months of inhibitor diagnosis. Pre-ITI PITs were a strong predictor of eventual ITI success with 1 or more ITI courses: 76.4% of those with pre-ITI PITs of 5 to 39 Bethesda Units (BUs) achieved tolerance (median, 0.72 years) vs 70.9% of those with pre-ITI PITs of 40 to 200 BU (median, 2.1 years) vs 42.1% of those with pre-ITI PITs of &gt;200 BU (median, 5.1 years). A PIT of &gt;200 BU during the first course of ITI was a strong predictor of ultimately failing ITI. The ITI regimen, whether administered daily or nondaily at a high or low dose, was not a predictor of ITI success with the first course of ITI. Conclusion: These predictors of success may be used to decide whether and how to initiate ITI when nonreplacement prophylaxis is available.</p>}},
  author       = {{Carcao, Manuel and Königs, Christoph and Andersson, Nadine G. and de Kovel, Marloes and de Boer-Verdonk, Elsbeth and Motwani, Jayashree and Blatny, Jan and Olivieri, Martin and van den Berg, Marijke and Fischer, Kathelijn}},
  issn         = {{1538-7933}},
  keywords     = {{alloantibodies against FVIII; hemophilia A; immune tolerance induction; inhibitor; tolerance}},
  language     = {{eng}},
  number       = {{10}},
  pages        = {{3134--3147}},
  publisher    = {{Elsevier}},
  series       = {{Journal of Thrombosis and Haemostasis}},
  title        = {{Predictors of immune tolerance induction success in 231 children with severe hemophilia A with high-titer inhibitors – lessons learned from the PedNet prospective cohort study}},
  url          = {{http://dx.doi.org/10.1016/j.jtha.2025.07.010}},
  doi          = {{10.1016/j.jtha.2025.07.010}},
  volume       = {{23}},
  year         = {{2025}},
}