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Newsletter for patients and parents December 2015

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Articles

2017

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. Full PDF

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. Full PDF

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. Full pdf

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

Fisher 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.