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Newsletter for patients and parents October 2020

Newsletter for patients and parents December 2015

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Articles

2021

Koskenvuo M, Mäkipernaa A, Nolan B, Kobelt R, Ranta S.

Correction of haemostasis can be reduced to four days for CVAD implantation in severe haemophilia A patients: Data from the PedNet study group https://onlinelibrary.wiley.com/doi/10.1111/hae.14231

2020

Andersson NG, Labarque V, Letelier A, Mancuso ME, Bührlen M, Fischer K, Kartal-Kaess M, Koskenvuo M, Mikkelsen T, Ljung R, the PedNet study group.

Novel F8 and F9 gene variants from the PedNet hemophilia registry classified according to ACMG/AMP guidelines https://onlinelibrary.wiley.com/doi/10.1002/humu.24117

Andersson NG, Wu R, Carcao M, Claeyssens-Donadel S, Kobelt R, Liesner R, Mäkipernaa A, Ranta S, Ljung R, the ICH study group.

Long-term follow-up of neonatal intracranial haemorrhage in children with severe Haemophilia https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.16740

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 https://onlinelibrary.wiley.com/doi/epdf/10.1111/hae.14100

van den Berg HM, Mancuso ME, Königs C, D’Oiron R, Platokouki H, Mikkelsen TS, Motwani J, Nolan B, Santagostino E.

ITI Treatment is not First-Choice Treatment in Children with Hemophilia A and Low-Responding Inhibitors: Evidence from a PedNet Study https://www.thieme-connect.de/products/ejournals/abstract/10.1055/s-0040-1713097

Male C, Andersson NG, Rafowicz A, Liesner R, Kurnik K, Fischer K, Platokouki H, Santagostino E, Chambost H, Nolan, B, Königs C, Kenet G, Ljung R, van den Berg HM.

Inhibitor Incidence In An Unselected Cohort Of Previously Untreated Patients With Severe Haemophilia B: A PedNet Study http://www.haematologica.org/content/early/2020/01/03/haematol.2019.239160

2019

van den Berg HM, Fischer K, Carcao M, Chambost H, Kenet G, Kurnik K, Königs C, Male C, Santagostino E, Ljung R.

Timing of inhibitor development in >1000 previously untreated patients with severe hemophilia A https://doi.org/10.1182/blood.2019000658

Volkers P, Hanschmann KM, Calvez T, Chambost H, Collins P, Demiguel V, Hart DP, Hay CRM, Goudemand J, Ljung R, Palmer BP, Santagostino E, van Hardeveld EM, van den Berg HM, Keller-Stanislawski B

Recombinant factor VIII products and inhibitor development in previously untreated patients with severe haemophilia A: Combined analysis of three studies https://onlinelibrary.wiley.com/doi/full/10.1111/hae.13747

Andersson NG, Chalmers EA, Kenet G, Ljung R, Mäkipernaa A, Chambost H

Mode of delivery in haemophilia: Vaginal delivery and cesarean section carry similar risk for intracranial hemorrhages and major bleeds www.haematologica.org/content/104/10/2100

2018

Keipert C, Jonker CJ, van den Berg HM, Hilger, A

Clinical trials and registries in haemophilia: Opponents or collaborators? Comparison of PUP data derived from different data sources  http://onlinelibrary.wiley.com/doi/10.1111/hae.13421/abstract

2017

Mancuso ME, Fischer K, Santagostino E, Oldenburg J, Platokouki H, Könings 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, Mäkipernaa A, Molinari AC, Williams M, van den Berg HM

PedNet (REMAIN) Study Group
Risk Factors for the Progression from Low to High Titres in 260 Children with Severe Haemophilia A and Newly Developed Inhibitors https://www.thieme-connect.com/DOI/DOI?10.1160/TH17-01-0059

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. http://onlinelibrary.wiley.com/doi/10.1111/hae.13387/full

Andersson NG, Auerswald G, Barnes C, Carcao M, Dunn AL, Fijnvandraat K, Hoffmann M, Kavakli K, Kenet G, Kobelt R, Kurnik K, Liesner R, Mäkipernaa A, Manco-Johnson MK, 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. http://onlinelibrary.wiley.com/doi/10.1111/bjh.14844/full

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. http://onlinelibrary.wiley.com/doi/10.1111/hae.13241/full

2016

Hashemi SM, Fischer K, Moons KG, van den Berg HM

PedNet study group.
Validation of the prediction model for inhibitor development in PUPS with severe haemophilia A. http://onlinelibrary.wiley.com/doi/10.1111/hae.12895/full

2015

van den Berg HM, Hashemi SM, Fischer K, Petrini P, Ljung R, Rafowicz A, Carcao M, Auerswald G, Kurnik K, Kenet G, Santagostino E

PedNet study group.
Increased inhibitor incidence in sever haemophilia A since 1990 attributable to more low titre inhibitors. https://www.thieme-connect.com/products/ejournals/abstract/10.1160/TH15-08-0692

Hashemi SM, Fischer K, Moons KG, van den Berg HM

Improved prediction of inhibitor development in previously untreated patients with severe haemophilia A. http://www.ncbi.nlm.nih.gov/pubmed/25495680

Nijdam A, Kurnik K, Liesner R, Ljung R, Nolan B, Petrini P, Fischer K

PedNet study group.
How to achieve full prophylaxis in young boys with severe haemophilia A: different regimens and their effect on early bleeding and venous access
http://onlinelibrary.wiley.com/doi/10.1111/hae.12613/pdf

2014

Nijdam A, Altisent C, Carcao MD, Cid AR, Claeyssens-Donadel S, Kurnik K, Ljung R, Nolan B, Petrini P, Platokouki H, Rafowicz A, Thomas AE, Fischer K

Bleeding before prophylaxis in severe hemophilia: paradigm shift over two decades.
http://www.haematologica.org/content/haematol/early/2014/12/16/haematol.2014.115709.full.pdf

Clausen N, Petrini P, Claeyssens-Donadel S, Gouw SC, Liesner R

PedNet and Research Of Determitants of INhibitor Development (RODIN) study group
Similar bleeding phenotype in young children with hemophilia A or B: a cohort study
http://onlinelibrary.wiley.com/doi/10.1111/hae.12470/pdf

Fischer K, Ljung R, Platokouki H, Liesner R, Claeyssens -Donadel S, Smink E, van den Berg HM.

Prospective observational cohort studies for studying rare
diseases: the European PedNet Haemophilia Registry
http://onlinelibrary.wiley.com/doi/10.1111/hae.12448/full

2013

van den Berg HM, Gouw SC, van der Bom JG.

PedNet and Research of Determinants of Inhibitor development (RODIN) Study Group.
Factor VIII products and inhibitors in severe hemophilia A.
N Engl J Med. 2013; 368 :1457.

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; 16: 4046-55.

Carcao MD, van den Berg HM, Ljung R, Mancuso ME

PedNet and the Rodin Study Group. PedNet and Research of Determinants of Inhibitor development (RODIN) Study Group.
Correlation between phenotype and genotype in a large unselected cohort of children with severe hemophilia A.
Blood 2013; 10: 3946-52.

Gouw SC, van der Bom JG, Ljung R, Escuriola C, Cid AR, Claeyssens-Donadel S, van Geet C, Kenet G, Mäkipernaa 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 ;368: 231-9.

<2013

Donadel-Claeyssens S.

Current co-ordinated activities of the PEDNET (European Paediatric Network for Haemophilia Management)
Haemophilia 2006 Mar;12(2):124-7.

Chambost H, Ljung R.

Pednet Group Changing pattern of care of boys with haemophilia in western European centres
Haemophilia 2005 Mar;11(2):92-9.

Hill F, Ljung R.

Third and fourth workshops of the European paediatric network for haemophilia Management.

Haemophilia 2003, 9, 223-228.

Ljung RCR, Aronis-Vournas S, Kurnik-Auberger K, 
Van den Berg HM, Chambost H, Claeyssens S et al.

Treatment of children with haemophilia in Europe: 
a survey of 20 centres in 16 countries.

Haemophilia 2000;6:619-24.

Ljung R.

Second workshop of the European Paediatric Network for Haemophilia Management 17-19 September 1998 in Vitznau/Switzerland.

Haemophilia 1999, 5, 286-291.