OBJECTIVES of the PedNet registry General objectives To investigate natural history, safety and efficacy of replacement and non-replacement therapies in prospectively followed birth cohorts of all unselected previously untreated children with Haemophilia A and B in the respective participating centres. Specific objectives

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2.3 Overview of current research topics (detailed in PedNet Research Program) The PedNet Haemophilia Research Foundation have structured the research work in several PedNet (Ped iatric Net work on haemophilia management) is a collaborative platform for haemophilia children treating (pediatric) physicians since 1996; together they form the PedNet study group. In 2004 the study group started the PedNet Haemophilia Registry, an observational data collection of children with haemophilia A and B. PedNet Haemophilia Registry The aim of the PedNet registry is to include complete cohorts of all newly diagnosed patients born from 01-01-2000 with congenital haemophilia A and B factor VIII/ IX ≤ 0.25 IU/ dl and treated in one of the 31 participating centres The PedNet registry (NCT02979119) is an international database of children born from Jan. 1, 2000, to Jan. 1, 2020, with all types of hemophilia in 18 countries. What is the PD Registry? The PD Registry is a technology system that functions as a workforce registry. A workforce registry increases the number of high quality early childhood education (ECE) programs by helping to develop and track a knowledgeable and skilled early childhood workforce. The PedNet Registry contains prospective data on children less than 18 years with hemophilia A or B born since January 1, 2000 who are followed up regularly in 31 hemophilia centers in 18 countries in Europe, Canada, and Israel.

The PedNet Registry contains prospective data on children less than 18 years with hemophilia A or B born since January 1, 2000 who are followed up regularly in 31 hemophilia centers in 18 countries in Europe, Canada, and Israel. Find any wedding registry, bridal registry, baby registry, or graduation registry at Registry Finder. Simply search by name! The European Paediatric Network for Haemophilia Management (PedNet Registry) (PedNet) The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. PedNet started 1996 PedNet Registry started 2003 The RODIN study was the first satellite study in the PedNet Registry (+ 8 “non-PedNet” centers) 2010 former “ex-PedNet centers joined PedNet PedNet Haemophilia Registry The aim of the PedNet registry is to include complete cohorts of all newly diagnosed patients born from 01-01-2000 with congenital haemophilia A and B factor VIII/ IX ≤ 0.25 IU/ dl and treated in one of the 31 participating centres The PedNet Registrystarted in 2003 and, in order to prevent selection bias, is set up as a birth cohort study.

On December 16th 2016 the PedNet Haemophilia Research Foundation was established. The foundation serves as legal body for the PedNet Registry and the PedNet group. The objectives of the foundation are to: promote scientific research relating to haemophilia and allied disorders;

For participating centres a minimum inclusion rate of 95% of all newly diagnosed patients is mandatory. PedNet has contracts with the participating centres and they 2 METHODS 2.1 The PedNet cohort.

Findings from the PedNet (European Pediatric Network for Hemophilia Management) registry showed severity and types of bleeding are similar during the early

16, 17 To provide a contemporaneous comparison to the clinical study, we selected all PUPs treated with human recombinant FVIII octocog alfa who were born between 2000 and 2009.

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In 2004 the study group started the PedNet Haemophilia Registry, an observational data collection of children with haemophilia A and B. PedNet Haemophilia Registry The aim of the PedNet registry is to include complete cohorts of all newly diagnosed patients born from 01-01-2000 with congenital haemophilia A and B factor VIII/ IX ≤ 0.25 IU/ dl and treated in one of the 31 participating centres The PedNet registry (NCT02979119) is an international database of children born from Jan. 1, 2000, to Jan. 1, 2020, with all types of hemophilia in 18 countries.

Therefore, it has been suggested that vaccinations should be done after or in close proximity to factor substitution. – The registry concerns young boys 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. Arms, Groups and Cohorts. Cohort I PedNet registry to facilitate research and healthcare development in children with haemophilia EUHASS (European Haemophilia Safety Surveillance) to monitor the safety of treatment for people with inherited bleeding disorders throughout Europe ABIRISK (Anti-Biopharmaceutical Immunization: prediction and analysis As of January 2018, the PedNet Haemophilia Registry had included 1035 patients with severe haemophilia A (factor VIII activity at baseline percentage ≤1%) from 31 haemophilia centres (www.pednet.eu, www.clinicaltrials.gov trial no: NCT02979119).
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17 This case received vaccination later than PedNet Registry study,4 leading to a stronger immune response and a higher inhibitor risk. Furthermore, this case lost.

Correspondence: Kathelijn Fischer, MD PhD, Julius Center for Health Sciences and Primary Care University Medical Center Utrecht, Room: Stratenum, 6.131, PO Box 85500, 3508 GA Utrecht, the Netherlands. Tel.: +31 88 756 8158; fax: +31 88 756 8099; Novel F8 and F9 gene variants from the PedNet Hemophilia Registry classified according to ACMG/AMP guidelines Nadine G Andersson , Veerle Labarque , Anna Letelier , Maria Elisa Mancuso , Martina Bührlen , Kathelijn Fischer , Mutlu Kartal-Kaess , Minna Koskenvuo , Torben Mikkelsen , Rolf Ljung & PedNet Study Group PedNet Study Group , 2020 dec , I: Human Mutation.

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Rolf Ljung är initiativtagare till PedNet Registry, ett unikt europeiskt register som skapades för tio år sedan genom samarbete med 22

The genetic reports of F8/F9 gene variants were classified uniformly to HGVS nomenclature and re-evaluated using international population- and disease-specific databases, literature survey and, where applicable, computational predictive programs. In the Tuesday morning session entitled World Bleeding Disorders Registry: Moving Forward, Marijke van den Berg shares the lessons learned from the PedNet registry and gave recommendations on best practices for the future. We used individual patient data from previously untreated patients (PUPs) with severe haemophilia A from the factor VIII (rAHF‐PFM)‐clinical study and the PedNet registry.

• PASS based on the EUHASS registry • HCP and patient/carer survey • PASS based on the PedNET registry See section II.C of this summary for an overview of the post-authorisation development plan. aPCC = activated prothrombin complex concentrate; DDI = drug -drug interaction; EUHASS =

The primary outcome was the patient characteristics at entry and the difference in inhibitor development between the clinical study and the registry‐based study at 50 exposure days. 2019-07-08 · Moreover, evidence from the PEDNET registry indicated that vaccinations given in close proximity to the factor substitution therapy did not increase the risk of inhibitory alloantibodies. Therefore, it has been suggested that vaccinations should be done after or in close proximity to factor substitution.

TY - JOUR. T1 - Prospective observational cohort studies for studying rare diseases: the European PedNet Haemophilia Registry. AU - Fischer, K. PedNet Registry In the PedNet Registry prospective data of well-defined clinical parameters are collected through a secured data capture system (Research Online). For participating centres a minimum inclusion rate of 95% of all newly diagnosed patients is mandatory. PedNet has contracts with the participating centres and they 2 METHODS 2.1 The PedNet cohort. Data were retrieved from the “PedNet Registry,” a database which is owned and administered by the 2.2 Subjects. All patients with either hemophilia A or B, registered in the PedNet Registry by January 1, 2018 ( n 2.3 Nomenclature.