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20 Apr 2017 The PedNet registry is a multicenter observational research database for hemophilia. All patients with hemophilia born after January 1, 2000,

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. 41 , 12 , s. 2058-2072 15 s. Methods: We included 375 PUPs with severe haemophilia A (<0.01 IU/mL) from the PedNet Registry who had received vaccinations between the first and 75th ED or inhibitor development. Inhibitor risk was compared between patients who did and who did not receive vaccinations within 24, 72 or 120 hours of FVIII infusion.

Pednet registry

Aim: The aim of this study was to investigate whether a disease registry could serve as a suitable alternative to clinical studies to investigate safety of orphan drugs in children. Methods: 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. 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. 41 , 12 , s.

The MAH will continue to support the RODIN/PedNet registry as well as the EUHASS registry, as per current obligations defined in the RMP, to further investigate individual risk factors for inhibitor development and risk mitigation in P UPs. No update of the RMP was considered necessary by the PRAC. Benefit –risk balance

Novel F8 and F9 gene variants from the PedNet hemophilia registry classified according to ACMG/AMP guidelines Andersson Nadine G., Labarque Veerle, Letelier Anna, Mancuso Maria Elisa, Bührlen Martina, Fischer Kathelijn, Kartal-Kaess Mutlu, Koskenvuo Minna, Mikkelsen Torben, Ljung Rolf, 1 dec 2020, In: Human mutation. The MAH will continue to support the RODIN/PedNet registry as well as the EUHASS registry, as per current obligations defined in the RMP, to further investigate individual risk factors for inhibitor development and risk mitigation in P UPs. No update of the RMP was considered necessary by the PRAC. Benefit –risk balance 2020-01-29 · received vaccination later than PedNet Registry study,4 leading to a stronger immune response and a higher inhibitor risk. Furthermore, this case lost FVIII tolerance after 100EDs and received low- dose ITI achieving negative inhibitor with a simi-lar time to high-dose ITI.18 We could speculate that the inherent immunologic mechanism is dif- 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 From the European Paediatric Network for Haemophilia Management' (PedNet) registry, patients with severe haemophilia A without inhibitors, born 2000-2012, receiving prophylaxis were included.

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

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). 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. for a registry Brigitte Keller-Stanislawski 09:35-09:50 5. Patients perspective Declan Noone 09:50-10:05 6. European Commission - European Platform on Rare Diseases Andri Papadopoulou 10:05-10:15 7.

Benefit –risk balance 2020-01-29 · received vaccination later than PedNet Registry study,4 leading to a stronger immune response and a higher inhibitor risk. Furthermore, this case lost FVIII tolerance after 100EDs and received low- dose ITI achieving negative inhibitor with a simi-lar time to high-dose ITI.18 We could speculate that the inherent immunologic mechanism is dif- 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 From the European Paediatric Network for Haemophilia Management' (PedNet) registry, patients with severe haemophilia A without inhibitors, born 2000-2012, receiving prophylaxis were included. Treatment centres were classified according to the initial frequency of prophylactic infusions and the age at reaching infusions >= 3 x week(-1).
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The PedNet registry including >2200 children with haemophilia is presented as an example of a registry/cohort study. AIM: The extent to which CTs and the PedNet registry met relevant parameters, identified in the ClinGL, as well as inhibitor incidences were investigated in patients from both sources.

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The NENA Enhanced PSAP Registry and Census (EPRC), developed in conjunction with GeoComm, is a secure database, web portal and map that contains

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.

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Registry The PedNet Haemophilia Registry is a database containing observational data of children with haemophilia A and B. The PedNet Haemophilia Registry is owned and administered by the PedNet Haemophila Research Foundation. The office of the study staff is located in Baarn, The Netherlands.

The PedNet Registry collects clinical, genetic, and phenotypic data prospectively on more than 2000 children with hemophilia.