Electronic diaries in the management of haemophilia gene therapy: Perspective of an expert group from the German, Austrian and Swiss Society on Thrombosis and Haemostasis (GTH).
Wolfgang A MiesbachHermann EichlerKatharina HolsteinSusanne HolzhauerRobert KlamrothRalf KnöflerChristoph MaleMartin OlivieriJohannes OldenburgAndreas TiedePublished in: Haemophilia : the official journal of the World Federation of Hemophilia (2022)
Important information needs to be shared between patients and treatment centres in a real-world GT hub-and-spoke model. Collecting and sharing this information in well-organised electronic applications will not only improve patient care but also enable national and international data collection in clinical registries.
Keyphrases
- gene therapy
- health information
- end stage renal disease
- newly diagnosed
- ejection fraction
- peritoneal dialysis
- prognostic factors
- social media
- big data
- healthcare
- electronic health record
- machine learning
- clinical practice
- patient reported outcomes
- deep learning
- replacement therapy
- patient reported
- data analysis
- bioinformatics analysis