TBDBT: A TB DataBase Template for collection of harmonized TB clinical research data in REDCap, facilitating data standardisation for inter-study comparison and meta-analyses

Allie, Taryn; Jackson, Amanda; Ambler, Jon; Johnston, Katherine; Bruyn, Elsa Du; Schultz, Charlotte; Boloko, Linda; Wasserman, Sean; Davis, Angharad; Meintjes, Graeme; Wilkinson, Robert J.; Tiffin, Nicki

doi:10.1371/journal.pone.0249165

Cited by 2 publications

(1 citation statement)

References 10 publications

(7 reference statements)

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“…The REDCap consortium currently comprises of more than 4000 institutions in 137 countries and membership has the added advantage of free access to technical support and improvements to the platform [14,18]. In addition, using REDCap as the hosting platform, has the added advantage of having a single database for capturing and storing all research related data and this functionality was demonstrated for a Tuberculosis database (TBDBT) by Allie et al [19].…”

Section: E-consent Platformmentioning

confidence: 99%

An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template

2022

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Research involving human participants requires their consent, and it is common practice to capture consent information on paper and store those hard copies, presenting issues such as long-term storage requirements, inefficient retrieval of consent forms for reference or future use, and the potential for transcription errors when transcribing captured informed consent. There have been calls to move to electronic capture of the consent provided by research participants (e-consent) as a way of addressing these issues. A tiered framework for e-consent was designed using the freely available features in the inbuilt REDCap e-consent module. We implemented ‘branching logic’, ‘wet signature’ and ‘auto-archiver’ features to the main informed consent and withdrawal of consent documents. The branching logic feature streamlines the consent process by making follow-up information available depending on participant response, the ‘wet signature’ feature enables a timestamped electronic signature to be appended to the e-consent documents and the ‘auto-archiver’ allows for PDF copies of the e-consent documents to be stored in the database. When designing the content layout, we provided example participant information text which can be modified as required. Emphasis was placed on the flow of information to optimise participant understanding and this was achieved by merging the consent and participant information into one document where the consent questions were asked immediately after the corresponding participant information. In addition, we have provided example text for a generic human genomic research study, which can be easily edited and modified according to specific requirements. Building informed consent protocols and forms without prior experience can be daunting, so we have provided researchers with a REDCap template that can be directly incorporated into REDCap databases. It prompts researchers about the types of consent they can request for genomics studies and assists them with suggestions for the language they might use for participant information and consent questions. The use of this tiered e-consent module can ensure the accurate and efficient electronic capture and storage of the consents given by participants in a format that can be easily queried and can thus facilitate ethical and effective onward sharing of data and samples whilst upholding individual participant preferences.

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Section: E-consent Platformmentioning

confidence: 99%

An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template

2022

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An overview of next generation sequencing strategies and genomics tools used for tuberculosis research

Deb,

Basu,

Choudhary

2024

Journal of Applied Microbiology

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Tuberculosis (TB) is a grave public health concern and is considered the foremost contributor to human mortality resulting from infectious disease. Due to the stringent clonality and extremely restricted genomic diversity, conventional methods prove inefficient for in-depth exploration of minor genomic variations and the evolutionary dynamics operating in Mycobacterium tuberculosis (M.tb) populations. Until now, the majority of reviews have primarily focused on delineating the application of whole-genome sequencing (WGS) in predicting antibiotic resistant genes, surveillance of drug resistance strains, and M.tb lineage classifications. Despite the growing use of Next Generation Sequencing (NGS) and WGS analysis in tuberculosis (TB) research, there are limited studies that provide a comprehensive summary of its role in studying macroevolution, minor genetic variations, assessing mixed TB infections, and tracking transmission networks at an individual level. This highlights the need for systematic effort to fully explore the potential of WGS and its associated tools in advancing our understanding of TB epidemiology and disease transmission. We delve into the recent bioinformatics pipelines and Next-Generation Sequencing (NGS) strategies that leverage various genetic features and simultaneous exploration of host-pathogen protein expression profile to decipher the genetic heterogeneity and host-pathogen interaction dynamics of the M.tb infections. This review highlights the potential benefits and limitations of NGS and bioinformatics tools and discusses their role in TB detection and epidemiology. Overall, this review could be a valuable resource for researchers and clinicians interested in NGS-based approaches in TB research.

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TBDBT: A TB DataBase Template for collection of harmonized TB clinical research data in REDCap, facilitating data standardisation for inter-study comparison and meta-analyses

Cited by 2 publications

References 10 publications

An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template

An e-consent framework for tiered informed consent for human genomic research in the global south, implemented as a REDCap template

An overview of next generation sequencing strategies and genomics tools used for tuberculosis research

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