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219 results on '"van den Berg, H Marijke"'

4. Different inhibitor incidence for individual factor VIII concentrates in 1076 previously untreated patients with severe hemophilia A: data from the PedNet cohort

Author

Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Cardiovasculaire Epi Team 1, Fischer, Kathelijn, Carcao, Manuel, Male, Christoph, Ranta, Susanna, Pergantou, Helen, Kenet, Gili, Kartal-Kaess, Mutlu, Königs, Christoph, Carvalho, Manuela, Alvarez, Maria Teresa, Brakenhoff, Timo, Chambost, Hervé, van den Berg, H. Marijke, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Cardiovasculaire Epi Team 1, Fischer, Kathelijn, Carcao, Manuel, Male, Christoph, Ranta, Susanna, Pergantou, Helen, Kenet, Gili, Kartal-Kaess, Mutlu, Königs, Christoph, Carvalho, Manuela, Alvarez, Maria Teresa, Brakenhoff, Timo, Chambost, Hervé, and van den Berg, H. Marijke

Published
2023

5. Different inhibitor incidence for individual factor VIII concentrates in 1076 PUPS with severe hemophilia A: data from the PedNet cohort

Author

Fischer, Kathelijn, primary, Carcao, Manuel, additional, Male, Christoph, additional, Ranta, Susanna, additional, Pergantou, Helen, additional, Kenet, Gili, additional, Kartal-Kaess, Mutlu, additional, Königs, Christoph, additional, Carvalho, Manuela, additional, Alvarez, Maria Teresa, additional, Brakenhoff, Timo, additional, Chambost, Hervé, additional, and van den Berg, H Marijke, additional

Published
2022
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8. Intensity of factor VIII treatment and inhibitor development in children with severe hemophilia A: the RODIN study

Author

Gouw, Samantha C., van den Berg, H. Marijke, Fischer, Kathelijn, Auerswald, Günter, Carcao, Manuel, Chalmers, Elizabeth, Chambost, Hervé, Kurnik, Karin, Liesner, Ri, Petrini, Pia, Platokouki, Helen, Altisent, Carmen, Oldenburg, Johannes, Nolan, Beatrice, Garrido, Rosario Pérez, Mancuso, M. Elisa, Rafowicz, Anne, Williams, Mike, Clausen, Niels, Middelburg, Rutger A., Ljung, Rolf, and van der Bom, Johanna G.

Published
2013
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12. Primary prophylaxis in children with severe haemophilia A and B—Implementation over the last 20 years as illustrated in real‐world data in the PedNet cohorts.

Author

Ljung, Rolf, de Kovel, Marloes, and van den Berg, H. Marijke

Subjects
HEMOPHILIA, PREVENTIVE medicine, BLOOD coagulation factor IX
Abstract

Introduction: The prophylactic regimen in children with severe haemophilia is suggested in various publications and guidelines. Few data exist on its implementation in clinical practice. Aim: To investigate the implementation of primary prophylaxis based on real‐life data from PedNet during the last 20 years. Methods: All children from the PedNet cohort (n = 1260) with severe haemophilia A (SHA) or severe haemophilia B (SHB), FVIII/IX <.01 IU/mL, born between 2000 and 2009 (Cohort I; SHA n = 662; SHB n = 88) and 2010–2019 (Cohort II; SHA n = 598; SHB n = 94) were included. Results: In SHA, the median age at start of prophylaxis was 17.3 months (IQR; 12.5–26.1) in Cohort I which decreased to 13.1 months (IQR; 10.4–19.1) in Cohort II (p <.000). "Once‐a‐week" prophylaxis at start increased from 49% to 68% (SHA) and 38% to 70% (SHB). FVIII doses were reduced from median 43.5 (IQR; 34.6–49.0) to 30.9 IU/kg (IQR; 26.3–46.3), while dosing with FIX did not change. After 2010 approximately 60% of the patients with SHA and SHB started prophylaxis before any joint bleed. The number of CVADs needed in both cohorts was around 30%. Incidences of inhibitors were unchanged: SHA (∼31%) and SHB (∼10%). Sporadic cases were diagnosed significantly later (median 8.3 months; IQR; 3.7–11.9) and they had more joint bleeds before start of prophylaxis. Conclusion: Primary prophylaxis nowadays starts at an earlier age: before any joint bleed (60% of patients with SHA and SHB). Approximately 70% started on a once‐weekly schedule with significantly reduced doses in SHA but unchanged in SHB. [ABSTRACT FROM AUTHOR]

Published
2023
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15. Inhibitor incidence in an unselected cohort of previously untreated patients with severe haemophilia B: A PedNet study

Author

Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Male, Christoph, Andersson, Nadine G., Rafowicz, Anne, Liesner, Ri, Kurnik, Karin, Fischer, Kathelijn, Platokouki, Helen, Santagostino, Elena, Chambost, Hervé, Nolan, Beatrice, Königs, Christoph, Kenet, Gili, Ljung, Rolf, Van Den Berg, H. Marijke, PedNet Study Group, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Male, Christoph, Andersson, Nadine G., Rafowicz, Anne, Liesner, Ri, Kurnik, Karin, Fischer, Kathelijn, Platokouki, Helen, Santagostino, Elena, Chambost, Hervé, Nolan, Beatrice, Königs, Christoph, Kenet, Gili, Ljung, Rolf, Van Den Berg, H. Marijke, and PedNet Study Group

Published
2021

21. Factor VIII Products and Inhibitor Development in Severe Hemophilia A

Author

Gouw, Samantha C., van der Bom, Johanna G., Ljung, Rolf, Escuriola, Carmen, Cid, Ana R., Claeyssens-Donadel, Ségolène, van Geet, Christel, Kenet, Gili, Mäkipernaa, Anne, Molinari, Angelo Claudio, Muntean, Wolfgang, Kobelt, Rainer, Rivard, George, Santagostino, Elena, Thomas, Angela, and van den Berg, H. Marijke

Published
2013
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23. U.S. Cohort Study of Previously Untreated Patients with Congenital Hemophilia (ATHN 8: PUPs Study): Association between Family History and Age of Diagnosis

Author

Thornburg, Courtney D, primary, Friedman, Kenneth D, additional, Guerrera, Michael F, additional, He, Chunla, additional, Malec, Lynn M, additional, Simpson, Mindy L, additional, Tarantino, Michael D, additional, Van Den Berg, H. Marijke, additional, Watson, Crystal, additional, and Carpenter, Shannon L, additional

Published
2020
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25. Inhibitor development in previously untreated patients with severe haemophilia: A comparison of included patients and outcomes between a clinical study and a registry-based study

Author

CTM & Statistical consultation, Directie Raad van Bestuur, Circulatory Health, Cardiovasculaire Epi Team 1, Jonker, Carla J, Oude Rengerink, Katrien, Hoes, Arno W, Mol, Peter G M, van den Berg, H Marijke, CTM & Statistical consultation, Directie Raad van Bestuur, Circulatory Health, Cardiovasculaire Epi Team 1, Jonker, Carla J, Oude Rengerink, Katrien, Hoes, Arno W, Mol, Peter G M, and van den Berg, H Marijke

Published
2020

35. Drug Registries and Approval of Drugs: Promises, Placebo, or a Real Success?

Author

Datamanagement 1, Epidemiology & Health Economics, General Practice & Nursing Science, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Jonker, Carla J., Kwa, Marcel S.G., van den Berg, H. Marijke, Hoes, Arno W., Mol, Peter G.M., Datamanagement 1, Epidemiology & Health Economics, General Practice & Nursing Science, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Jonker, Carla J., Kwa, Marcel S.G., van den Berg, H. Marijke, Hoes, Arno W., and Mol, Peter G.M.

Published
2018

36. Risk Factors for the Progression from Low to High Titres in 260 Children with Severe Haemophilia A and Newly Developed Inhibitors

Author

Mancuso, Maria Elisa, Fischer, Kathelijn, Santagostino, Elena, Oldenburg, Johannes, Platokouki, Helen, Königs, Cristoph, Escuriola-Ettingshausen, Carmen, Rivard, George E, Cid-Haro, Ana Rosa, Carcao, Manuel, Ljung, Rolf, Petrini, Pia, Altisent, Carmen, Kenet, Gili, Liesner, Raina, Kurnik, Karin, Auerswald, Günther, Chambost, Hérvè, Mäkipernaa, Anne, Molinari, Angelo Claudio, Williams, Mike, van den Berg, H Marijke, and European Pediatric Network for Haemophilia Management (PedNet) the REMAIN (REal life MAnagement of children with INhibitors) Study Group

Subjects
immune tolerance induction, congenital, hereditary, and neonatal diseases and abnormalities, children, hemic and lymphatic diseases, inhibitors, haemophilia A, high titre
Abstract

In children with severe haemophilia A, inhibitors to factor VIII (FVIII) usually develop during the first 50 treatment exposure days and are classified as low or high titre depending on the peak inhibitor titre being greater or less than 5 Bethesda units/mL (BU/mL). Classification of the inhibitor may change with time, as some low-titre inhibitors progress to high titre following re-exposure to FVIII concentrate. The aim of this study was to investigate potential risk factors for such a progression in children with severe haemophilia A and newly diagnosed inhibitors. This study was a follow-up study of the PedNet Registry and included 260 children with severe haemophilia A and inhibitors born between 1990 and 2009 and recruited consecutively from 31 haemophilia centres. Clinical and laboratory data were collected from the date of each child's first positive inhibitor test for at least 3 years. At the time of first positive inhibitor test, 49% (n = 127) had low-titre inhibitors, with 50% of them progressing to high titre and only 25% maintaining low titres. The FVIII gene (F8) mutation type was known in 247 patients (95%), and included 202 (82%) null mutations. The progression to high-titre inhibitors was associated with null F8 mutations (odds ratio [OR]: 2.6; 95% confidence interval [CI]: 1.0-6.5), family history of inhibitors (OR: 7.2; 95% CI: 1.8-28.4) and the use of high-dose immune tolerance induction, defined as >= 100 IU FVIII concentrate/kg/d (OR: 3.9; 95% CI: 1.5-10.0). These results suggest that high-dose immune tolerance induction should be avoided as the initial strategy in patients who develop low-titre FVIII inhibitors.

Published
2017

38. Registries supporting new drug applications

Author

Datamanagement 1, Epidemiology & Health Economics, General Practice & Nursing Science, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Jonker, Carla J., van den Berg, H. Marijke, Kwa, Marcel S.G., Hoes, Arno W., Mol, Peter G M, Datamanagement 1, Epidemiology & Health Economics, General Practice & Nursing Science, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Jonker, Carla J., van den Berg, H. Marijke, Kwa, Marcel S.G., Hoes, Arno W., and Mol, Peter G M

Published
2017

39. Risk Factors for the Progression from Low to High Titres in 260 Children with Severe Haemophilia A and Newly Developed Inhibitors

Author

Cardiovasculaire Epi Team 1, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Poli Van Creveldkliniek Medisch, Child Health, Datamanagement 1, Mancuso, Maria Elisa, Fischer, Kathelijn, Santagostino, Elena, Oldenburg, Johannes, Platokouki, Helen, Königs, Cristoph, Escuriola-Ettingshausen, Carmen, Rivard, George E, Cid-Haro, Ana Rosa, Carcao, Manuel, Ljung, Rolf, Petrini, Pia, Altisent, Carmen, Kenet, Gili, Liesner, Raina, Kurnik, Karin, Auerswald, Günther, Chambost, Hérvè, Mäkipernaa, Anne, Molinari, Angelo Claudio, Williams, Mike, van den Berg, H Marijke, European Pediatric Network for Haemophilia Management (PedNet) the REMAIN (REal life MAnagement of children with INhibitors) Study Group, Cardiovasculaire Epi Team 1, Circulatory Health, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Poli Van Creveldkliniek Medisch, Child Health, Datamanagement 1, Mancuso, Maria Elisa, Fischer, Kathelijn, Santagostino, Elena, Oldenburg, Johannes, Platokouki, Helen, Königs, Cristoph, Escuriola-Ettingshausen, Carmen, Rivard, George E, Cid-Haro, Ana Rosa, Carcao, Manuel, Ljung, Rolf, Petrini, Pia, Altisent, Carmen, Kenet, Gili, Liesner, Raina, Kurnik, Karin, Auerswald, Günther, Chambost, Hérvè, Mäkipernaa, Anne, Molinari, Angelo Claudio, Williams, Mike, van den Berg, H Marijke, and European Pediatric Network for Haemophilia Management (PedNet) the REMAIN (REal life MAnagement of children with INhibitors) Study Group

Published
2017

42. Increased inhibitor incidence in severe haemophilia A since 1990 attributable to more low titre inhibitors

Author

van den Berg, H. Marijke, Hashemi, S. Mojtaba, Fischer, Kathelijn, Petrini, Pia, Ljung, Rolf, Rafowicz, Anne, Carcao, Manuel, Auerswald, Günter, Kurnik, Karin, Kenet, Gili, Santagostino, Elena, van den Berg, H. Marijke, Hashemi, S. Mojtaba, Fischer, Kathelijn, Petrini, Pia, Ljung, Rolf, Rafowicz, Anne, Carcao, Manuel, Auerswald, Günter, Kurnik, Karin, Kenet, Gili, and Santagostino, Elena

Published
2016

43. Different impact of factor VIII products on inhibitor development?

Author

Cardiovasculaire Epi Team 1, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Circulatory Health, van den Berg, H Marijke, Cardiovasculaire Epi Team 1, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Circulatory Health, and van den Berg, H Marijke

Published
2016

44. Increased inhibitor incidence in severe haemophilia A since 1990 attributable to more low titre inhibitors

Author

Cardiovasculaire Epi Team 1, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Poli Van Creveldkliniek Medisch, Circulatory Health, van den Berg, H. Marijke, Hashemi, S. Mojtaba, Fischer, Kathelijn, Petrini, Pia, Ljung, Rolf, Rafowicz, Anne, Carcao, Manuel, Auerswald, Günter, Kurnik, Karin, Kenet, Gili, Santagostino, Elena, Cardiovasculaire Epi Team 1, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Poli Van Creveldkliniek Medisch, Circulatory Health, van den Berg, H. Marijke, Hashemi, S. Mojtaba, Fischer, Kathelijn, Petrini, Pia, Ljung, Rolf, Rafowicz, Anne, Carcao, Manuel, Auerswald, Günter, Kurnik, Karin, Kenet, Gili, and Santagostino, Elena

Published
2016

49. Factor VIII-specific B cell responses in haemophilia A patients with inhibitors

Author

van Helden, P. M. W., van Haren, S. D., Fijnvandraat, K., van den Berg, H. Marijke, Voorberg, J., ACS - Amsterdam Cardiovascular Sciences, AII - Amsterdam institute for Infection and Immunity, Paediatric Infectious Diseases / Rheumatology / Immunology, and Landsteiner Laboratory

Subjects
congenital, hereditary, and neonatal diseases and abnormalities, animal diseases, hemic and lymphatic diseases
Abstract

Development of inhibitory antibodies to factor VIII (FVIII) provides a major complication of replacement therapy in patients with haemophilia A. The risk of inhibitor formation is influenced by the underlying FVIII gene defect. Moreover, genetic determinants in the promoter region of IL-10 and TNFalpha have been linked to an increased risk of inhibitor development. Recent cohort-studies have provided evidence that the risk of inhibitor formation is linked to intensity of treatment. Eradication of FVIII inhibitors can be achieved by frequent infusion of high dosages of FVIII, so-called immune tolerance induction (ITI). Until now, the mechanisms involved in downmodulation of the immune response to FVIII during ITI have not been unraveled. Studies performed in an animal model for haemophilia A have suggested that elimination of FVIII-specific memory B cells by high dosages of FVIII contributes to the decline in FVIII inhibitor levels during ITI. Limited knowledge is available with respect to the development and persistence of FVIII-specific memory B cells in patients with haemophilia A. Two recent studies suggest that the frequency of peripheral FVIII-specific memory B cells in haemophilia A patients with inhibitors range from

Published
2010

50. Factor VIII half life and clinical phenotype of severe hemophilia A

Author

Van Dijk, Karin, Van Der Bom, Johanna G., Lenting, Peter J., De Groot, Philip G., Mauser-Bunschoten, Eveline P., Roosendaal, Goris, Grobbee, Diederick E., Van Den Berg, H. Marijke, Medical Microbiology and Infection Prevention, AII - Infectious diseases, and AII - Inflammatory diseases

Subjects
hemic and lymphatic diseases
Abstract

Background and Objectives. Patients with severe hemophilia A have considerably different factor VIII half-lives. Whether this is associated with their clinical characteristics has not been reported. The aim of this study was to describe the association of factor VIII half-lives with treatment and clinical characteristics of patients with severe hemophilia A, who have been treated with individually tailored prophylaxis. Design and Methods. Patients were selected from a single-center cohort of 214 patients with severe hemophilia, born between 1944 and 1995. To improve efficiency we measured factor VIII half-life in 42 patients selected from the extremes of the distribution of phenotypes of severe hemophilia. We assessed information on life-long joint bleeds and clotting factor consumption. Orthopedic outcome was assessed by the Pettersson score. Results. Among these patients with severe hemophilia, factor VIII half-life ranged from 7.4-20.4 hours (median 11.8 hours). A one-hour increase in factor VIII half-life was associated with 96 (95% confidence interval (Cl) 2-190) IU less clotting factor use per kg per year. Age was an important determinant of factor VIII half-life, and explained a large part of the association between factor VIII half-life and clotting factor consumption. The median number of joint bleeds per year and arthropathy were similar for patients with different half-lives. Interpretations and Conclusions. Among patients with severe hemophilia, treated prophylactically with clotting factor, those with a shorter factor VIII half-life required slightly more clotting factor to prevent joint bleeds and subsequent arthropathy than similar patients with a longer factor VIII half-life.

Published
2005

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