title: Haemophilia in a real-world setting: the value of clinical experience in data collection.
abstract: At the 8th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) held in Helsinki, Finland, in February 2015, Pfizer sponsored a satellite symposium entitled: 'Haemophilia in a real-world setting: The value of clinical experience in data collection' Co-chaired by Riitta Lassila (Helsinki University Central Hospital, Helsinki, Finland) and Gerry Dolan (Guy's and St Thomas' Hospital, London, UK); the symposium provided an opportunity to explore the practical value of real-world data in informing clinical decision-making. Gerry Dolan provided an introduction to the symposium by describing what is meant by real-world data (RWD), stressing the role RWD can play in optimising patient outcomes in haemophilia and highlighting the responsibility of all stakeholders to collaborate in continuous data collection. Kristian Juusola (Oulu University Hospital, Oulu, Finland) then provided personal experience as a haemophilia nurse around patient views on adherence to treatment regimes, and how collecting insights into real-world use of treatment can shape approaches to improving adherence. The importance of elucidating pharmacokinetic parameters in a real-world setting was then explored by Vuokko Jokela (Helsinki University, Helsinki, Finland). Finally, Alfonso Iorio (McMaster University, Hamilton, Ontario, Canada) highlighted the importance of quality data collection in translating clinical reality into scientific advances.
authors.affiliation: Guy's and St Thomas' Hospital, London, UK.
authors.forename: Gerry
authors.initials: G
authors.lastname: Dolan
authors.affiliation: McMaster University, Hamilton, ON, Canada.
authors.forename: Alfonso
authors.initials: A
authors.lastname: Iorio
authors.affiliation: Helsinki University, Helsinki, Finland.
authors.forename: Vuokko
authors.initials: V
authors.lastname: Jokela
authors.affiliation: Oulu University Hospital, Oulu, Finland.
authors.forename: Kristian
authors.initials: K
authors.lastname: Juusola
authors.affiliation: Helsinki University, Helsinki, Finland.
authors.forename: Riitta
authors.initials: R
authors.lastname: Lassila
mesh_terms: D000066491:Clinical Decision-Making; D003029:Coagulants / Q000493:pharmacokinetics / Q000627:therapeutic use*; D003625:Data Collection / Q000706:statistics & numerical data*; D005164:Factor IX / Q000493:pharmacokinetics / Q000627:therapeutic use*; D005387:Finland; D006467:Hemophilia A / Q000188:drug therapy* / Q000503:physiopathology / Q000523:psychology; D006801:Humans; D010349:Patient Compliance / Q000523:psychology / Q000706:statistics & numerical data; D009626:Terminology as Topic; D016896:Treatment Outcome
chemical_list: D003029:Coagulants; D005164:Factor IX
keywords: collaboration; haemophilia; outcomes; real-world data