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).
data management
electronic diaries
gene therapy
haemophilia treatment
treatment centres
Journal
Haemophilia : the official journal of the World Federation of Hemophilia
ISSN: 1365-2516
Titre abrégé: Haemophilia
Pays: England
ID NLM: 9442916
Informations de publication
Date de publication:
Mar 2022
Mar 2022
Historique:
revised:
29
01
2022
received:
14
12
2021
accepted:
04
02
2022
pubmed:
20
2
2022
medline:
15
3
2022
entrez:
19
2
2022
Statut:
ppublish
Résumé
Gene therapy (GT) is becoming a realistic treatment option for patients with haemophilia. Outside clinical trials, the complexity and potential complications of GT will pose unprecedented challenges to haemophilia care centres. To explore the potential use of electronic tools to improve the delivery of GT under real-world conditions. Considering the hub-and-spoke model, the GTH working group on GT considered the entire patient pathway and reached consensus on requirements for an integrative software tool to secure documenting and sharing information between treaters, pharmacies and patients. Six steps of the gene therapy process were identified, each requiring completion of the previous step as a prerequisite for entry. The responsibilities of GT dosing and follow-up treatment centres, read/write access rules, and the minimum data set were outlined. Data contributed by patients through mobile devices was also considered. 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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
264-269Informations de copyright
© 2022 The Authors. Haemophilia published by John Wiley & Sons Ltd.
Références
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