Close
The project
The TB-IPD platform is a WHO Global TB Programme initiative, contracted initially to University College London for the first 5 years.
The goal of the IPD is to increase the knowledge base for normative guidance on optimal treatment modalities for TB and stimulate TB research. This will be done both by aggregating Individual Patient Data where possible into a single dataset, and also by encouraging and facilitating scientists to develop novel research proposals that make use of the data.
The TB-IPD Platform will house individual patient data which is effectively anonymised. The term 鈥榚ffectively anonymised鈥� refers to data which: (i) does not relate to an identified or identifiable individual; or (ii) has been rendered anonymous in such a way that individuals are not (or are no longer) identifiable. Data held by UCL within the TB-IPD will also be stored securely so that the risk of indirect re-identification is very low.
Although the initial concept note proposed an IPD that focused on drug-resistant TB or observational data, we now believe that this a priori limitation in scope is not required. We are in principle open to include data on drug-resistant or drug-sensitive TB, regardless of study design. The platform will also expand to hold TB treatment data in pregnancy and paediatrics (made possible by engagement with Stellenbosch University). The patient data to be provided will come from a range of relevant global resources, including researchers, local and national databases relating to TB and development and public health research and surveillance projects.听We plan to extend the IPD to include data from clinical trials in TB which would be stored alongside the observational data but not be pooled.
This project builds on two IPDs set up, managed and analysed at McGill University under the direction of Dr Dick Menzies.
Our team
UCL team
Project leads: &
Data Management:听
Asset Administrator: Assica Hakiman
Communications lead: Lydia Walker
听
WHO team
Medical Officer and Treatment Team Lead:听Dr Fuad Mirzayev听
Scientist:听Dr Samuel Schumacher
Medical Officers:听Dr Medea Gegia听&听Dr Linh Nhat Hguyen
Governance听
We work within the framework of research governance policies and procedures adopted by UCL to ensure that research is carried out legally, ethically and with integrity.
The governance of this project is encompassed in:
- Ethical and data protection impact assessments reviewed and approved by the UCL Research Ethics Committee
- Legal agreements (Data Sharing Agreement, Data Access Agreement) between UCL and Data Contributors and researchers
- Procedures for review and oversight
- Secure handling and storage of data
We 听have in place a structure and process that includes oversight provided by a Data Access Committee and a Steering Committee. Membership to these committees is on a rolling basis.
Data Access Committee
The committee with responsibility for reviewing and accepting or rejecting applications for data access. It will be comprised of a combination of Data Contributors, the WHO and UCL, and other stakeholders as deemed appropriate;听
- Professor Anneke Hesseling (Stellenbosch University, South Africa)
- Professor听Salmaan Keshavjee (Harvard Medical School, USA)
- Dr听Norbert Ndjeka (National Department of Health, South Africa)
- Dr Carla Winston (Centers for Disease Control, USA)
- Dr Bern-Thomas Nyang鈥檞a (M茅decins Sans Fronti猫res, Netherlands)
- Dr Ezio T谩vora dos Santos Filho (REDE-TB - Brazilian TB Research Network, Brazil)
Data Access Committee Terms of Reference听听
Data Access Committee meetings for the year 2024:
1st听meeting: 7th听March 2024
2nd听meeting: 8th听July 2024
3rd听meeting: 3rd听October 2024
Please note that registration will close two weeks prior to each meeting. Applicants are advised to submit their requests close to the registration deadline to minimize the waiting period.
Steering Committee
The Steering Committee have responsibility for oversight and coordination of the TB-IPD听Platform.
Previous Data Curators
Read more information about previous data curators.