About us

The project
Our team
Governance
Frequently Asked Questions

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 ‘effectively anonymised’ 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. 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: Prof Molebogeng (Lele) Rangaka & Dr Ruth Goodall

Data Management: Dr Stella Fabiane

Asset Administrator: Assica Hakiman

Communications lead: Lydia Walker

WHO team

Medical Officer and Treatment Team Lead: Dr Fuad Mirzayev

Scientist: Dr Samuel Schumacher

Medical Officers: Dr Medea Gegia & Dr Linh Nhat Hguyen

Governance

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 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;

Professor Anneke Hesseling (Stellenbosch University, South Africa)
Professor Salmaan Keshavjee (Harvard Medical School, USA)
Dr Norbert Ndjeka (National Department of Health, South Africa)
Dr Carla Winston (Centers for Disease Control, USA)
Dr Bern-Thomas Nyang’wa (Médecins Sans Frontières, Netherlands)
Dr Ezio Távora dos Santos Filho (REDE-TB - Brazilian TB Research Network, Brazil)

Data Access Committee Terms of Reference

Data Access Committee meetings for the year 2024:

1^st meeting: 7^th March 2024

2^nd meeting: 8^th July 2024

3^rd meeting: 3^rd 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 has responsibility for the oversight and coordination of the TB-IPD Platform. For now, the Steering Committee comprises members of the secretariat.