Twenty‐one haemophilia treatment centres have been collecting data on all children with haemophilia with FVIII/IX levels up to 25% born from 2000 onwards. Another eight centres collected data on severe haemophilia A only. At baseline, details on delivery and diagnosis, gene mutation, family history of haemophilia and inhibitors are collected.
Research on hemophilia with focus on genetic and clinical studies. Chairman of the PedNet Hemophilia Research Foundation (https://pednet.eu). Head of "DNA Hemophilia lab" in Lund offering all
Twenty-one haemophilia treatment centres have been collecting data on all children with haemophilia with FVIII/IX levels up The optimal mode of delivery for a pregnant hemophilia carrier is still a matter of debate. The aim of the study was to determine the incidence of intracranial hemorrhage and other major bleeds in neonates with moderate and severe hemophilia in relationship to mode of delivery and known family history. A total of 926 neonates, 786 with severe and 140 with moderate hemophilia were included in Pednet registry Inclusion criteria Diagnosis of haemophilia A or B, all severities; Factor VIII/IX activity <25% (25 IU/ dL); Data available form the first treatment onwards; Born during the study period and treated from diagnosis onwards at a participating centre. (Cohort 1: 2000-2009; Cohort 2: … 1.
2019-07-08 · Recommendations for vaccination practices for patients with hemophilia should be reassessed in an effort to minimize fear and emphasize the importance of vaccination to prevent infections, suggests a survey among physicians in Germany. Data from the PEDNET registry, a database of children with Patients with severe hemophilia A in the PedNet Hemophilia Registry database (www.pednet.nl) and the Research on Determinants of Inhibitors (RODIN) Study database (www.rodinstudy.eu) were included. The 2 databases constitute a joint research effort among 29 hemophilia centers in Europe, Israel, and Canada. PedNet has set up a registry/cohort database containing coded data of all children with haemophilia born from 01 January 2000 and onwards, who are diagnosed and treated at one of the participating centres and contains basic data, detailed information on the first 50 exposure days (ED) and annual follow‐up data. Haemophilia is a rare disease. To improve knowledge, prospective studies of large numbers of subjects are needed. To establish a large well-documented birth cohort of patients with haemophilia enabling studies on early presentation, side effects and outcome of treatment.
All patients with either hemophilia A or B, registered in the PedNet Registry by January 1, 2018 (n=1967) were included. Data on pa-tients’ demographics, type and severity of hemophilia, and family history of hemophilia were collected.
Affiliations. 1 PedNet Haemophilia Research Foundation, Baarn, The Netherlands. 2 Van Creveld Kliniek, University Medical Center Utrecht, Utrecht, The Netherlands. 3 Division of Haematology/Oncology, Hospital for Sick Children, Toronto, ON, Canada.
The PedNet Registry collects clinical, genetic and phenotypic data prospectively on >2000 children with hemophilia. The PedNet Registry is a prospective, multicenter database that includes all children born since 1 January 2000 diagnosed with hemophilia A (HA) or B (HB) of all severities and treated in the 31 participating hemophilia centers in Europe, Canada and Israel. 14 Baseline data regarding the neonatal period are collected on mode of delivery, neonatal events, family history of hemophilia, and gestational age.
PedNet Haemophilia Research Foundation A. Bianchi Bonomi Hemophilia and Thrombosis Centre. Institute of Internal Medicine IRCCS Ospedale Maggiore Milano, ITALY
The booklet explains each card and how to use them to play different educational games. To order In-HemoAction game boxes, please complete the form below.
PedNet provides an infrastructure for clinical research on the management of children with haemophilia. Currently the PedNet study group consists of 31 haemophilia treatment centres in 18 countries. Each In-HemoAction game box contains 2 decks of 31 colour cards and an instruction booklet. Each card simply illustrates a concept important to the understanding and management of hemophilia. The booklet explains each card and how to use them to play different educational games.
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2 Van Creveld Kliniek, University Medical Center Utrecht, Utrecht, The Netherlands. 3 Division of Haematology/Oncology, Hospital for Sick Children, Toronto, ON, Canada.
Clinical and laboratory data were collected from the date of each child's first positive inhibitor test for at least 3 years.
Fackforbunden
1. Haemophilia. 2017 Jul;23(4):e276-e281. doi: 10.1111/hae.13241. Epub 2017 May 24. The impact of clinical practice on the outcome of central venous access devices in children with haemophilia. Khair K(1), Ranta S(2), Thomas A(3), Lindvall K(4); PedNet study group.
Each In-HemoAction game box contains 2 decks of 31 colour cards and an instruction booklet.