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)
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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). / Miesbach, Wolfgang; Eichler, Hermann; Holstein, Katharina; Holzhauer, Susanne; Klamroth, Robert; Knöfler, Ralf; Male, Christoph; Olivieri, Martin; Oldenburg, Johannes; Tiede, Andreas.
in: HAEMOPHILIA, Jahrgang 28, Nr. 2, 03.2022, S. 264-269.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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TY - JOUR
T1 - 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)
AU - Miesbach, Wolfgang
AU - Eichler, Hermann
AU - Holstein, Katharina
AU - Holzhauer, Susanne
AU - Klamroth, Robert
AU - Knöfler, Ralf
AU - Male, Christoph
AU - Olivieri, Martin
AU - Oldenburg, Johannes
AU - Tiede, Andreas
N1 - © 2022 The Authors. Haemophilia published by John Wiley & Sons Ltd.
PY - 2022/3
Y1 - 2022/3
N2 - INTRODUCTION: 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.AIM: To explore the potential use of electronic tools to improve the delivery of GT under real-world conditions.METHODS: 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.RESULTS: 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.CONCLUSION: 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.
AB - INTRODUCTION: 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.AIM: To explore the potential use of electronic tools to improve the delivery of GT under real-world conditions.METHODS: 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.RESULTS: 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.CONCLUSION: 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.
KW - Austria
KW - Electronics
KW - Genetic Therapy
KW - Hemophilia A/genetics
KW - Hemostasis
KW - Humans
KW - Switzerland
KW - Thrombosis/therapy
U2 - 10.1111/hae.14516
DO - 10.1111/hae.14516
M3 - SCORING: Journal article
C2 - 35182445
VL - 28
SP - 264
EP - 269
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
IS - 2
ER -