Prospective observational cohort studies for studying rare diseases: the European PedNet Haemophilia Registry.
about
Different impact of factor VIII products on inhibitor development?Large scale studies assessing anti-factor VIII antibody development in previously untreated haemophilia A: what has been learned, what to believe and how to learn more.Importance of an International Registry for and Collaborative Research on Esophageal Atresia.Traceability of biologicals: present challenges in pharmacovigilance.The growing number of hemophilia registries: Quantity vs. quality.The impact of clinical practice on the outcome of central venous access devices in children with haemophilia.Registry-based outcome assessment in haemophilia: a scoping study to explore the available evidence.Safety surveillance in haemophilia and allied disorders.Long-term effects of joint bleeding before starting prophylaxis in severe haemophilia.Research Registries: A Tool to Advance Understanding of Rare Neuro-Ophthalmic Diseases.Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective.Using routine Haemophilia Joint Health Score for international comparisons of haemophilia outcome: standardization is needed.Bleeding before prophylaxis in severe hemophilia: paradigm shift over two decades.Haemophilia registries to complement clinical trial data: a pious hope or an urgent necessity?: Reflections on a possible way forward.Improved prediction of inhibitor development in previously untreated patients with severe haemophilia A.How to achieve full prophylaxis in young boys with severe haemophilia A: different regimens and their effect on early bleeding and venous access.Vaccinations are not associated with inhibitor development in boys with severe haemophilia A.When and how to start prophylaxis in boys with severe hemophilia without inhibitors: communication from the SSC of the ISTH.Using a meta-narrative literature review and focus groups with key stakeholders to identify perceived challenges and solutions for generating robust evidence on the effectiveness of treatments for rare diseases.
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P2860
Prospective observational cohort studies for studying rare diseases: the European PedNet Haemophilia Registry.
description
2014 nî lūn-bûn
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name
Prospective observational coho ...... n PedNet Haemophilia Registry.
@en
Prospective observational coho ...... n PedNet Haemophilia Registry.
@nl
type
label
Prospective observational coho ...... n PedNet Haemophilia Registry.
@en
Prospective observational coho ...... n PedNet Haemophilia Registry.
@nl
prefLabel
Prospective observational coho ...... n PedNet Haemophilia Registry.
@en
Prospective observational coho ...... n PedNet Haemophilia Registry.
@nl
P2093
P2860
P356
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Prospective observational coho ...... n PedNet Haemophilia Registry.
@en
P2093
H M van den Berg
H Platokouki
S Claeyssens
P2860
P304
P356
10.1111/HAE.12448
P577
2014-05-02T00:00:00Z