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Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine

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Skein LTD, Kemp House, 152-160 City Road, London EC1V 2NX, UK
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Department of Paediatrics, University of Oxford, Oxford OX3 9DU, UK
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Institute of Biomedical Engineering, Department of Engineering Science, University of Oxford, Oxford OX3 7DQ, UK
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Department of Primary Care and Public Health, School of Public Health, Imperial College London, London W6 8RP, UK
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Author to whom correspondence should be addressed.
Biomedicines 2019, 7(4), 100; https://doi.org/10.3390/biomedicines7040100
Received: 12 November 2019 / Revised: 6 December 2019 / Accepted: 11 December 2019 / Published: 15 December 2019
Comprehensive pharmacogenomic understanding requires both robust genomic and demographic data. Patient registries present an opportunity to collect large amounts of robust, patient-level data. Pharmacogenomic advancement in the treatment of infectious diseases is yet to be fully realised. Herpes simplex virus (HSV) is one disease for which pharmacogenomic understanding is wanting. This paper aims to understand the key factors that impact data collection quality for medical registries and suggest potential design features of an HSV medical registry to overcome current constraints and allow for this data to be used as a complement to genomic and clinical data to further the treatment of HSV. This paper outlines the discovery phase for the development of an HSV registry with the aim of learning about the users and their contexts, the technological constraints and the potential improvements that can be made. The design requirements and user stories for the HSV registry have been identified for further alpha phase development. The current landscape of HSV research and patient registry development were discussed. Through the analysis of the current state of the art and thematic user analysis, potential design features were elucidated to facilitate the collection of high-quality, robust patient-level data which could contribute to advances in pharmacogenomic understanding and personalised medicine in HSV. The user requirements specification for the development of an HSV registry has been summarised and implementation strategies for the alpha phase discussed. View Full-Text
Keywords: registries; herpes simplex; pharmacokinetics; data collection registries; herpes simplex; pharmacokinetics; data collection
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MDPI and ACS Style

Surodina, S.; Lam, C.; de Cock, C.; van Velthoven, M.; Milne-Ives, M.; Meinert, E. Engineering Requirements of a Herpes Simplex Virus Patient Registry: Discovery Phase of a Real-World Evidence Platform to Advance Pharmacogenomics and Personalized Medicine. Biomedicines 2019, 7, 100.

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