The European Paediatric Network for Haemophilia Management ( PedNet Registry)

NCT ID: NCT02979119

Last Updated: 2025-09-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

4000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2014-06-30

Study Completion Date

2039-12-31

Brief Summary

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Rationale:

Haemophilia is a rare disease; to improve knowledge international collaboration is needed. Well-defined clinical data will be collected from complete cohorts in order to prevent selection bias.

Objective:

To collect data on bleeding during neonatal period, endogenous (genetic) and exogenous (treatment-related) determinants of inhibitor development and long term outcome.

Detailed Description

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Design: Multicenter Prospective Observational Birth Cohort Study

Population:

Patients with haemophilia A and B with FVIII/IX levels of \<1 to 25% born between 1-1-2000 and 1-1-2040.

Intervention:

No intervention; only documentation of patient characteristics and parameters of routine patient care and outcome

Main outcome parameters:

Outcome: clinically relevant inhibitor development, bleeding pattern and joint status on physical examination and imaging.

Determinants: baseline FVIII/IX levels, measurement of inhibitory antibodies, family history, FVIII/IX gene mutation, details on replacement therapy (according to each infusion for the first 50 treatment days, and annually thereafter) and surgeries.

Nature and extent of the burden and risks associated with participation, benefit and group relatedness:

* No burden for the patients. Well-defined clinical data will be collected from the medical files. Participating in this registry will not change the number of visits to the clinic. All outcome parameters that are collected (including laboratory results) are part of routine clinical care.
* Direct benefit is not to be expected. However, the direct interaction between centres that treat patients with rare diseases improves both clinical care and will result in better guidelines and as such may provide indirect benefit.
* Multicentre participation: haemophilia is a very rare condition. Therefore, collecting data on a multi-centre observational cohort is the only way to study this specific population.
* The registry concerns young boys and girls with haemophilia and cannot be performed in older patients, as \>90% of inhibitors occur develop during the first 50 exposure days, and the results of prophylactic replacement therapy are highly dependent on the initiation of this treatment.

Conditions

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Factor VIII Deficiency Factor IX Deficiency

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Cohort I

Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2000 until December 31st 2009 who have been or are to be treated with coagulation proteins in one of the participating centres

No interventions assigned to this group

Cohort II

Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2010 until December 31st 2019 who have been or are to be treated with coagulation proteins in one of the participating centres

No interventions assigned to this group

Cohort III

Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2020 until December 31st 2029 who have been or are to be treated with coagulation proteins in one of the participating centres

No interventions assigned to this group

Cohort IV

Cohort IV Group/Cohort Description: Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2030 until December 31st 2039 who have been or are to be treated with coagulation proteins in one of the participating centres

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Diagnosed with Haemophilia A or B
* Factor VIII/ IX activity of \<1 to 25%
* Complete records of Factor treatment and bleeds
* Treated in one of the participating centres

Exclusion Criteria

* Patients referred because of an inhibitor\*
* Informed consent not obtained
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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PedNet Haemophilia Research Foundation

OTHER

Sponsor Role lead

Responsible Party

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Gili Kenet

Director

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Gili Kenet, PhD, MD

Role: STUDY_DIRECTOR

The National Hemophilia Center Ministry of Health Sheba Medical Center Ramat Gan, Israel

Christoph Male, MD

Role: STUDY_CHAIR

Medical University of Vienna

Gili Kenet, PhD, MD

Role: PRINCIPAL_INVESTIGATOR

The National Hemophilia Center Ministry of Health Sheba Medical Center Ramat Gan, Israel

Locations

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Universitäts-Klinik für Kinder- und Jugendheilkunde

Graz, , Austria

Site Status COMPLETED

Medical University of Vienna - Department of Paediatrics

Vienna, , Austria

Site Status RECRUITING

Service of Pediatric Haematology University Hospital Leuven

Leuven, , Belgium

Site Status RECRUITING

Division of Hematology/Oncology Hôpital St Justine

Montreal, , Canada

Site Status RECRUITING

Division of Haematology/Oncology Hospital for Sick Children

Toronto, , Canada

Site Status RECRUITING

Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno

Brno, , Czechia

Site Status RECRUITING

Department of Paediatric Haematology/oncology - University Hospital Motol

Prague, , Czechia

Site Status RECRUITING

Department of Pediatrics Århus Kommunehospital Skejby Sygehus

Aarhus, , Denmark

Site Status RECRUITING

Children's Hospital Helsinki University Hospital

Helsinki, , Finland

Site Status RECRUITING

Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre

Le Kremlin-Bicêtre, , France

Site Status RECRUITING

Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone

Marseille Cedex-05, , France

Site Status RECRUITING

Centre de traitement des hémophiles Hôpital Universitaire Purpan

Toulouse, , France

Site Status RECRUITING

Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie

Berlin, , Germany

Site Status RECRUITING

Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain

Berlin, , Germany

Site Status RECRUITING

Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn

Bonn, , Germany

Site Status RECRUITING

Klinik Bremen-Mitte Prof.-Hess-Kinderklinik

Bremen, , Germany

Site Status RECRUITING

Hämophilie Zentrum Rhein Main

Frankfurt, , Germany

Site Status RECRUITING

University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics

Frankfurt am Main, , Germany

Site Status RECRUITING

Dr. v. Haunersches Kinderspital University of Munich

Munich, , Germany

Site Status RECRUITING

Haemophilia-Haemostasis Unit St. Sophia Children's Hospital

Athens, , Greece

Site Status RECRUITING

Children's Health Ireland (CHI) at Crumlin

Dublin, , Ireland

Site Status RECRUITING

The National Hemophilia Center Sheba Medical Center, Tel Hashomer

Ramat Gan, , Israel

Site Status RECRUITING

Azienda Ospedaliero Universitaria Careggi

Florence, , Italy

Site Status RECRUITING

Gaslini Hospital

Genova, , Italy

Site Status RECRUITING

A. Bianchi Bonomi Hemophilia and Thrombosis Centre IRCCS Ca' Granda Ospedale Maggiore Policlinico

Milan, , Italy

Site Status COMPLETED

Van Creveld Kliniek University Medical Center Utrecht

Utrecht, , Netherlands

Site Status RECRUITING

Oslo University Hospital

Oslo, , Norway

Site Status NOT_YET_RECRUITING

Centro Hospitalar São João, S. Imuno-hemoterapia

Porto, , Portugal

Site Status RECRUITING

Unitat Hemofilia Hospital Vall d'Hebron

Barcelona, , Spain

Site Status RECRUITING

Unidad de Coagulopatías Hospital Universitario La Paz

Madrid, , Spain

Site Status RECRUITING

Hospital General Unidad de Hemofilia 1 Sur Hospitales Universitarios Virgen del Rocio

Seville, , Spain

Site Status COMPLETED

Unidad de Coagulopatias Congenitas Hospital Universitario la Fe

Valencia, , Spain

Site Status RECRUITING

Lund University Hospital

Malmo, , Sweden

Site Status RECRUITING

Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital

Stockholm, , Sweden

Site Status RECRUITING

Inselspital Bern, University Children's Hospital

Bern, , Switzerland

Site Status RECRUITING

Birmingham Children's Hospital NHS Trust - Department of Haematology

Birmingham, , United Kingdom

Site Status RECRUITING

Royal Hospital for Sick Children

Edinburgh, , United Kingdom

Site Status COMPLETED

Department of Haematology Royal Hospital for Sick Children

Glasgow, , United Kingdom

Site Status RECRUITING

Haemophila Center Great Ormond Street Hospital for Children

London, , United Kingdom

Site Status COMPLETED

Countries

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Austria Belgium Canada Czechia Denmark Finland France Germany Greece Ireland Israel Italy Netherlands Norway Portugal Spain Sweden Switzerland United Kingdom

Central Contacts

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Angelique Hermeling

Role: CONTACT

+31850299993

Hermeling

Role: CONTACT

Facility Contacts

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Christoph Male, MD

Role: primary

Christel Van Geet, MD, PhD

Role: primary

Natalie Mathews, MD

Role: primary

Manuel Carcao, MD, PhD

Role: primary

Jan Blatny, MD, PhD

Role: primary

Ester Zapotocka, MD

Role: primary

Torben Stamm Mikkelsen, MD

Role: primary

Satu Langstrom, MD, PhD

Role: primary

Roseline d'Oiron, MD

Role: primary

Hervé Chambost, MD, PhD

Role: primary

Caroline Oudot, MD

Role: primary

Susanne Holzhauer, MD

Role: primary

Robert Klamroth, MD, PhD

Role: primary

Johannes Oldenburg, MD, PhD

Role: primary

Martina Bührlen, MD

Role: primary

Carmen Escuriola Ettingshausen, MD

Role: primary

Christoph Königs, MD, PhD

Role: primary

Martin Olivieri, MD

Role: primary

Helen Pergantou, MD

Role: primary

Beatrice Nolan, MD

Role: primary

Sarina Levy Mendelovich, MD

Role: primary

Giancarlo Castaman, MD

Role: primary

Angelo Claudio Molinari, MD

Role: primary

Corien Eckhardt, MD, PhD

Role: primary

Heidi Knüdsen, MD

Role: primary

Manuela Carvalho, MD

Role: primary

Olga Benítez Hidalgo, MD

Role: primary

Maria Theresa Alvarez Roman, MD

Role: primary

Ana Rosa Cid, MD

Role: primary

Nadine Gretenkort Andersson, MD, PhD

Role: primary

Susanna Ranta, MD

Role: primary

Mutlu Kartal-Kaess, MD

Role: primary

Jayashree Motwani, MD

Role: primary

Fernando Pinto, MD

Role: primary

References

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de Kovel M, van Haaster AC, Carcao M, Ranta S, Glosli H, Rivard GE, Kenet G, Kurnik K, Van Geet C, Carvalho M, Andersson NG, Kartal-Kaess M, Ljung R, van den Berg HM; PedNet Study Group. Blood Group O Does Not Increase the Risk of Inhibitors in Severe Haemophilia A: Data from the PedNet Study Group. Haemophilia. 2025 May;31(3):419-423. doi: 10.1111/hae.70035. Epub 2025 Mar 23.

Reference Type BACKGROUND
PMID: 40123267 (View on PubMed)

Carcao M, Konigs C, Andersson NG, de Kovel M, de Boer-Verdonk E, Motwani J, Blatny J, Olivieri M, van den Berg M, Fischer K. 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. J Thromb Haemost. 2025 Oct;23(10):3134-3147. doi: 10.1016/j.jtha.2025.07.010. Epub 2025 Jul 22.

Reference Type BACKGROUND
PMID: 40706963 (View on PubMed)

Mendoza A, Rivas I, Hidalgo OB, Cid AR, Olivieri M, Ranta S, Labarque V, Andersson NG, de Kovel M, Alvarez-Roman MT. Impact of Family History of Haemophilia on Diagnosis, Management and Outcomes in Severe Haemophilia. Haemophilia. 2025 Jul;31(4):679-686. doi: 10.1111/hae.70018. Epub 2025 May 30.

Reference Type BACKGROUND
PMID: 40444652 (View on PubMed)

Ranta S, Zapotocka E, Andersson NG, Fischer K, Kenet G, de Kovel M, Konigs C, Labarque V, Male C, Olivieri M, Motwani J. A survey on clinical practice in monitoring and management of bleeding in children with haemophilia A on emicizumab prophylaxis in the PedNet centres. Thromb Res. 2025 May;249:109307. doi: 10.1016/j.thromres.2025.109307. Epub 2025 Mar 19. No abstract available.

Reference Type BACKGROUND
PMID: 40120320 (View on PubMed)

van den Berg HM, Gouw SC, van der Bom JG. Factor VIII products and inhibitors in severe hemophilia A. N Engl J Med. 2013 Apr 11;368(15):1457. doi: 10.1056/NEJMc1301995. No abstract available.

Reference Type BACKGROUND
PMID: 23574131 (View on PubMed)

Gouw SC, van den Berg HM, Fischer K, Auerswald G, Carcao M, Chalmers E, Chambost H, Kurnik K, Liesner R, Petrini P, Platokouki H, Altisent C, Oldenburg J, Nolan B, Garrido RP, Mancuso ME, Rafowicz A, Williams M, Clausen N, Middelburg RA, Ljung R, van der Bom JG; PedNet and Research of Determinants of INhibitor development (RODIN) Study Group. Intensity of factor VIII treatment and inhibitor development in children with severe hemophilia A: the RODIN study. Blood. 2013 May 16;121(20):4046-55. doi: 10.1182/blood-2012-09-457036. Epub 2013 Apr 3.

Reference Type BACKGROUND
PMID: 23553768 (View on PubMed)

Carcao MD, van den Berg HM, Ljung R, Mancuso ME; PedNet and the Rodin Study Group. Correlation between phenotype and genotype in a large unselected cohort of children with severe hemophilia A. Blood. 2013 May 9;121(19):3946-52, S1. doi: 10.1182/blood-2012-11-469403. Epub 2013 Mar 12.

Reference Type BACKGROUND
PMID: 23482934 (View on PubMed)

Clausen N, Petrini P, Claeyssens-Donadel S, Gouw SC, Liesner R; PedNet and Research of Determinants of Inhibitor development (RODIN) Study Group. Similar bleeding phenotype in young children with haemophilia A or B: a cohort study. Haemophilia. 2014 Nov;20(6):747-55. doi: 10.1111/hae.12470. Epub 2014 Jun 3.

Reference Type BACKGROUND
PMID: 24893572 (View on PubMed)

Fischer K, Ljung R, Platokouki H, Liesner R, Claeyssens S, Smink E, van den Berg HM. Prospective observational cohort studies for studying rare diseases: the European PedNet Haemophilia Registry. Haemophilia. 2014 Jul;20(4):e280-6. doi: 10.1111/hae.12448. Epub 2014 May 2.

Reference Type BACKGROUND
PMID: 24784937 (View on PubMed)

Gouw SC, van der Bom JG, Ljung R, Escuriola C, Cid AR, Claeyssens-Donadel S, van Geet C, Kenet G, Makipernaa A, Molinari AC, Muntean W, Kobelt R, Rivard G, Santagostino E, Thomas A, van den Berg HM; PedNet and RODIN Study Group. Factor VIII products and inhibitor development in severe hemophilia A. N Engl J Med. 2013 Jan 17;368(3):231-9. doi: 10.1056/NEJMoa1208024.

Reference Type BACKGROUND
PMID: 23323899 (View on PubMed)

Andersson NG, Auerswald G, Barnes C, Carcao M, Dunn AL, Fijnvandraat K, Hoffmann M, Kavakli K, Kenet G, Kobelt R, Kurnik K, Liesner R, Makipernaa A, Manco-Johnson MJ, Mancuso ME, Molinari AC, Nolan B, Perez Garrido R, Petrini P, Platokouki HE, Shapiro AD, Wu R, Ljung R. Intracranial haemorrhage in children and adolescents with severe haemophilia A or B - the impact of prophylactic treatment. Br J Haematol. 2017 Oct;179(2):298-307. doi: 10.1111/bjh.14844. Epub 2017 Jul 12.

Reference Type BACKGROUND
PMID: 28699675 (View on PubMed)

Mancuso ME, Fischer K, Santagostino E, Oldenburg J, Platokouki H, Konigs C, Escuriola-Ettingshausen C, Rivard GE, Cid AR, Carcao M, Ljung R, Petrini P, Altisent C, Kenet G, Liesner R, Kurnik K, Auerswald G, Chambost H, Makipernaa A, Molinari AC, Williams M, van den Berg HM; European Pediatric Network for Haemophilia Management (PedNet) the REMAIN (REal life MAnagement of children with INhibitors) Study Group. Risk Factors for the Progression from Low to High Titres in 260 Children with Severe Haemophilia A and Newly Developed Inhibitors. Thromb Haemost. 2017 Dec;117(12):2274-2282. doi: 10.1160/TH17-01-0059. Epub 2017 Dec 6.

Reference Type BACKGROUND
PMID: 29212115 (View on PubMed)

Andersson NG, Chalmers EA, Kenet G, Ljung R, Makipernaa A, Chambost H; PedNet Haemophilia Research Foundation. Mode of delivery in hemophilia: vaginal delivery and Cesarean section carry similar risks for intracranial hemorrhages and other major bleeds. Haematologica. 2019 Oct;104(10):2100-2106. doi: 10.3324/haematol.2018.209619. Epub 2019 Feb 21.

Reference Type BACKGROUND
PMID: 30792204 (View on PubMed)

van den Berg HM, Fischer K, Carcao M, Chambost H, Kenet G, Kurnik K, Konigs C, Male C, Santagostino E, Ljung R; PedNet Study Group. Timing of inhibitor development in more than 1000 previously untreated patients with severe hemophilia A. Blood. 2019 Jul 18;134(3):317-320. doi: 10.1182/blood.2019000658. Epub 2019 Jun 11. No abstract available.

Reference Type BACKGROUND
PMID: 31186271 (View on PubMed)

Male C, Andersson NG, Rafowicz A, Liesner R, Kurnik K, Fischer K, Platokouki H, Santagostino E, Chambost H, Nolan B, Konigs C, Kenet G, Ljung R, Van den Berg M. Inhibitor incidence in an unselected cohort of previously untreated patients with severe haemophilia B: a PedNet study. Haematologica. 2021 Jan 1;106(1):123-129. doi: 10.3324/haematol.2019.239160.

Reference Type BACKGROUND
PMID: 31919092 (View on PubMed)

van den Berg HM, Mancuso ME, Konigs C, D'Oiron R, Platokouki H, Mikkelsen TS, Motwani J, Nolan B, Santagostino E; European Pediatric Network for Haemophilia Management (PedNet). ITI Treatment is not First-Choice Treatment in Children with Hemophilia A and Low-Responding Inhibitors: Evidence from a PedNet Study. Thromb Haemost. 2020 Aug;120(8):1166-1172. doi: 10.1055/s-0040-1713097. Epub 2020 Jun 22.

Reference Type BACKGROUND
PMID: 32572865 (View on PubMed)

Andersson NG, Wu R, Carcao M, Claeyssens-Donadel S, Kobelt R, Liesner R, Makipernaa A, Ranta S, Ljung R; ICH study group. Long-term follow-up of neonatal intracranial haemorrhage in children with severe haemophilia. Br J Haematol. 2020 Jul;190(2):e101-e104. doi: 10.1111/bjh.16740. Epub 2020 Jun 9. No abstract available.

Reference Type BACKGROUND
PMID: 32519345 (View on PubMed)

Platokouki H, Fischer K, Gouw SC, Rafowicz A, Carcao M, Kenet G, Liesner R, Kurnik K, Rivard GE, van den Berg HM. Vaccinations are not associated with inhibitor development in boys with severe haemophilia A. Haemophilia. 2018 Mar;24(2):283-290. doi: 10.1111/hae.13387. Epub 2017 Dec 15.

Reference Type BACKGROUND
PMID: 29243367 (View on PubMed)

Khair K, Ranta S, Thomas A, Lindvall K; PedNet study group. The impact of clinical practice on the outcome of central venous access devices in children with haemophilia. Haemophilia. 2017 Jul;23(4):e276-e281. doi: 10.1111/hae.13241. Epub 2017 May 24.

Reference Type BACKGROUND
PMID: 28544163 (View on PubMed)

Hashemi SM, Fischer K, Moons KGM, van den Berg HM; PedNet Study group. Validation of the prediction model for inhibitor development in PUPs with severe haemophilia A. Haemophilia. 2016 Mar;22(2):e116-e118. doi: 10.1111/hae.12895. Epub 2016 Feb 8. No abstract available.

Reference Type BACKGROUND
PMID: 26856685 (View on PubMed)

Ranta S, Motwani J, Blatny J, Buhrlen M, Carcao M, Chambost H, Escuriola C, Fischer K, Kartal-Kaess M, de Kovel M, Kenet G, Male C, Nolan B, d'Oiron R, Olivieri M, Zapotocka E, Andersson NG, Konigs C. Dilemmas on emicizumab in children with haemophilia A: A survey of strategies from PedNet centres. Haemophilia. 2023 Sep;29(5):1291-1298. doi: 10.1111/hae.14847. Epub 2023 Aug 30.

Reference Type BACKGROUND
PMID: 37647211 (View on PubMed)

Labarque V, Mancuso ME, Kartal-Kaess M, Ljung R, Mikkelsen TS, Andersson NG. F8/F9 variants in the population-based PedNet Registry cohort compared with locus-specific genetic databases of the European Association for Haemophilia and Allied Disorders and the Centers for Disease Control and Prevention Hemophilia A or Hemophilia B Mutation Project. Res Pract Thromb Haemost. 2023 Jan 10;7(1):100036. doi: 10.1016/j.rpth.2023.100036. eCollection 2023 Jan.

Reference Type BACKGROUND
PMID: 36798899 (View on PubMed)

Fischer K, Carcao M, Male C, Ranta S, Pergantou H, Kenet G, Kartal-Kaess M, Konigs C, Carvalho M, Alvarez MT, Brakenhoff T, Chambost H, van den Berg HM. Different inhibitor incidence for individual factor VIII concentrates in 1076 previously untreated patients with severe hemophilia A: data from the PedNet cohort. J Thromb Haemost. 2023 Mar;21(3):700-703. doi: 10.1016/j.jtha.2022.11.020. Epub 2022 Dec 22. No abstract available.

Reference Type BACKGROUND
PMID: 36696215 (View on PubMed)

Ljung R, de Kovel M, van den Berg HM; PedNet study group. 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. Haemophilia. 2023 Mar;29(2):498-504. doi: 10.1111/hae.14729. Epub 2022 Dec 26.

Reference Type BACKGROUND
PMID: 36571801 (View on PubMed)

Schmidt DE, Michalopoulou A, Fischer K, Motwani J, Andersson NG, Pergantou H, Ranta S; PedNet Study Group. Long-term joint outcomes in adolescents with moderate or severe haemophilia A. Haemophilia. 2022 Nov;28(6):1054-1061. doi: 10.1111/hae.14636. Epub 2022 Aug 4.

Reference Type BACKGROUND
PMID: 35925557 (View on PubMed)

Alvarez-Roman MT, Kurnik K; PedNet Study Group. Care for children with haemophilia during COVID-19: Data of the PedNet study group. Haemophilia. 2021 Jul;27(4):e537-e539. doi: 10.1111/hae.14286. Epub 2021 Mar 8. No abstract available.

Reference Type BACKGROUND
PMID: 33683753 (View on PubMed)

Minna K, Anne M, Beatrice N, Rainer K, Susanna R. Correction of haemostasis can be reduced to four days for CVAD implantation in severe haemophilia A patients: Data from the PedNet study group. Haemophilia. 2021 May;27(3):392-397. doi: 10.1111/hae.14231. Epub 2021 Mar 21.

Reference Type BACKGROUND
PMID: 33745218 (View on PubMed)

Andersson NG, Labarque V, Letelier A, Mancuso ME, Buhrlen M, Fischer K, Kartal-Kaess M, Koskenvuo M, Mikkelsen T, Ljung R; PedNet study group. Novel F8 and F9 gene variants from the PedNet hemophilia registry classified according to ACMG/AMP guidelines. Hum Mutat. 2020 Dec;41(12):2058-2072. doi: 10.1002/humu.24117. Epub 2020 Oct 14.

Reference Type BACKGROUND
PMID: 32935414 (View on PubMed)

Jonker CJ, Oude Rengerink K, Hoes AW, Mol PGM, van den Berg HM. 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. Haemophilia. 2020 Sep;26(5):809-816. doi: 10.1111/hae.14100. Epub 2020 Jul 6.

Reference Type BACKGROUND
PMID: 32627880 (View on PubMed)

Andersson NG, Labarque V, Kartal-Kaess M, Pinto F, Mikkelsen TS, Ljung R, Group PS. Factor VIII genotype and the risk of developing high-responding or low-responding inhibitors in severe hemophilia A: data from the PedNet Hemophilia Cohort of 1,202 children. Haematologica. 2024 Apr 1;109(4):1293-1296. doi: 10.3324/haematol.2023.284095. No abstract available.

Reference Type BACKGROUND
PMID: 37881836 (View on PubMed)

Fischer K, Kenet G, Kurnik K, Carcao M, Oldenburg J, Stamm-Mikkelsen T, Cid Haro AR, Koskenvuo M, Blatny J, Konigs C. Determinants of bleeding before and during immune tolerance in 222 boys with severe hemophilia A and inhibitors >5 BU. Blood Adv. 2024 Jan 23;8(2):369-377. doi: 10.1182/bloodadvances.2023011442.

Reference Type BACKGROUND
PMID: 38214949 (View on PubMed)

van der Zwet K, de Kovel M, Motwani J, van Geet C, Nolan B, Glosli H, Escuriola Ettingshausen C, Konigs C, Kenet G, Fischer K; PedNet Investigators. Bleeding control improves after switching to emicizumab: Real-world experience of 177 children in the PedNet registry. Haemophilia. 2024 May;30(3):685-692. doi: 10.1111/hae.15015. Epub 2024 Apr 5.

Reference Type BACKGROUND
PMID: 38578720 (View on PubMed)

de Kovel MS, Escuriola-Ettingshausen C, Konigs C, Ranta S, Fischer K; PedNet Study Group. Bleeding phenotype according to factor level in 825 children with nonsevere hemophilia: data from the PedNet cohort. J Thromb Haemost. 2024 Sep;22(9):2460-2469. doi: 10.1016/j.jtha.2024.05.030. Epub 2024 Jun 10.

Reference Type BACKGROUND
PMID: 38866249 (View on PubMed)

Related Links

Access external resources that provide additional context or updates about the study.

http://www.pednet.eu

Website of the PedNet Registry

Other Identifiers

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Version 6.4 November 2022

Identifier Type: -

Identifier Source: org_study_id

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