TB Alliance accelerates advances in patient health by sharing clinical trial data responsibly

TB Alliance accelerates advances in patient health by sharing clinical trial data responsibly

Privacy Analytics’ anonymization makes data available for transparency

The Situation

The world’s leading infectious cause of death

Tuberculosis (TB) is the 13th leading cause of death globally, even though it is both preventable and curable. According to the World Health Organization, an estimated 1.8 billion people—close to one quarter of the world’s population—are infected with Mycobacterium tuberculosis (M.tb), the bacteria that causes TB. The disease is spread from person to person through coughing and sneezing.

A pandemic, TB is present in all countries and age groups, although 80 percent of cases and deaths occur in low- and middle-income countries. TB disease causes a heavy economic burden, trapping families, communities, and even entire countries in a cycle of poverty and illness.

Get the Facts



TB is the leading infectious killer in the world.



Highly drug-resistant TB therapy lasts from six months to longer than two years.



HAbout 2 out of 3 cases of DR-TB around the world go untreated,



MDR-TB could cost the world $16.7 trillion by 2050.



A million children get sick with TB every year.

Source: TB Alliance

The Global Alliance for TB Drug Development (TB Alliance) has been working since 2000 to leverage a global network of public and private partnerships to speed the discovery and development of faster-acting, affordable TB treatments. TB Alliance combines its own research and development expertise with the skills and resources of partners to harness the most promising science from around the world.

Unfortunately, when anti-TB drugs are misused or mismanaged, the bacteria can develop drug resistance over time, making the disease more difficult to treat—and hence more deadly. Drug-resistant TB poses a great threat to public health, with the world seeing more than half a million cases in 2022. In response to the challenges, TB Alliance has adopted a novel approach: instead of developing single drugs, TB Alliance strives to treat TB by developing and testing combinations of multiple new drugs at the same time.

"For us, the ability to open our data sets to the broader TB research community was mission critical … Privacy Analytics’ expertise was instrumental in us achieving this."

Matt Betteridge,

Director of Clinical Data Management for TB Alliance

TB Alliance has developed the first treatment for highly drug-resistant TB approved by the US Food and Drug Administration (FDA) and developed a child-friendly treatment for drug-sensitive TB. They have also built a robust portfolio of new drug candidates for the disease, changing the way TB research is conducted.

The Challenge

Sharing clinical trial data with the research community

In 2019, the BPaL regimen—a combination of three drugs, including one developed by the TB Alliance—was approved by the U.S. FDA for the treatment of adults with highly drug-resistant TB. The ZeNix trial, conducted by the TB Alliance and a range of partners, subsequently demonstrated that similar efficacy could be maintained with lower doses and shorter durations of one of the drugs.

TB Alliance had three data sets, including one from the ZeNix trial, that it sought to make available to researchers around the world in a way that was compliant with privacy regulations and industry best practices. To get the most value from this structured data, they needed to ensure that the privacy of people in the data was protected, while preserving the utility of the data as much as possible. In support of their mission, TB Alliance turned to Privacy Analytics.

The Solution

Evidence-based statistical anonymization

Privacy Analytics’ Clinical Trial Transparency Team began by understanding the environment and circumstances in which the clinical trial data sets would be shared. TB Alliance’s plan was to anonymize the three data sets and make them available to researchers through a platform with restricted access and proper security. Based on the robustness of the end users’ contextual controls—such as IT security controls, written agreements, and governance measures—Privacy Analytics assessed the potential threats and opportunities to identify patients in the data. The results of the assessment guided the required transformations to information that could directly or indirectly identify patients.

With the identifiability of the data determined under various circumstances in which the data sets will be used, Privacy Analytics then applied a balanced anonymization strategy. Different variables were transformed as necessary, using a range of techniques, to ensure that the usefulness of the anonymized data could be maintained while protecting patient privacy when the data is used for scientifically beneficial purposes in a controlled environment.

Matt Betteridge, Director of Clinical Data Management for TB Alliance, spoke to the transparency and efficiency of Privacy Analytics’ approach. “The scope of the project was clearly defined, and we knew what to expect as it progressed,” he said. “The team was quick to respond to our questions and to follow up as needed. The project and our interactions with the team were very well managed. Privacy Analytics actually exceeded the delivery terms, completing the project a full two weeks ahead of schedule.”

The Results

Accelerated research with anonymized data

Privacy Analytics delivered the anonymized datasets to TB Alliance along with reports that documented the anonymization process and explained how specific variables had been transformed to ensure the data could be shared safely. Privacy Analytics’ aim was to provide the organization with the most useful data, while balancing that need with sufficient measures to protect patient privacy.

As a result, TB Alliance has made the data sets accessible to qualified researchers around the world via a data-sharing platform. Once they complete an application process and submit to specific controls, TB researchers can complete their own analyses of the data or include them with other data sets in meta-analyses. Betteridge explained, “For us, the ability to open our data sets to the broader TB research community was mission critical as it will catalyze and accelerate TB research. Privacy Analytics’ expertise was instrumental in us achieving this.”

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