Data sharing platform expands access to clinical trials data

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Clinical trials are most likely to establish a causal relationship and attribute the benefits observed in the outcomes to the treatments. Effective data sharing and re-use of completed trial data can advance science and improve human health. Finding ways to share high-quality clinical trial data worldwide with researchers and the public is an important and evolving part of the global research ecosystem, but making this data easily accessible is a challenge.

In a recent paper, authors shared the different ways a health-related data sharing platform called Vivli can help researchers around the world. Specifically, they looked at Vivli's generalist repository for clinical trial data, launched in July 2018, and their repository of data specifically about antimicrobial resistance that launched in June 2022.

The paper was published in Health Data Science.

"Data sharing platforms offer a service to researchers worldwide by providing access to high-quality data. Vivli is the largest repository where researchers can request and access individual patient data collected in ," said Rebecca Li, at Vivli and a lecturer at the Center for Bioethics at Harvard Medical School.

"We currently cover trials from 20 therapeutic areas provided by 40 diverse contributors spanning biopharmaceutical sponsors, academic institutions, and non-profit foundations. Through Vivli, researchers can combine and access data from diverse sources to test their hypotheses and advance science."

Vivli's generalist repository is the largest clinical trial repository in the world, and they provide managed access to the data, which has been made anonymous to protect patient privacy. With data from more than 6,600 trials, this platform has contributed to over 100 publications that have wide-reaching implications across the clinical landscape.

One example for how this platform can nimbly respond to health data needs is the specialized community COVID-19 portal, which was launched in 2021. Through this portal, COVID-19 trials could be added more quickly to the platform so that data was available as quickly as possible to researchers.

In addition to general , Vivli has an antimicrobial resistance (AMR)-specific repository. "AMR is a present and growing global health threat," said Li. "Hundreds of thousands of people die each year from infections caused by drug-resistant bacteria. To tackle the AMR crisis, we need to fully understand it. To assist with this aim, the biopharmaceutical industry is sharing data from AMR surveillance programs with researchers via the newly launched AMR register."

The AMR is and includes data from several different companies that have antimicrobial programs that are studying AMR resistance. In addition, as recent policy changes come into effect in January 2023, all research that is funded by the National Institutes of Health (NIH) in the United States will be required to include a data management plan in order to make that federally funded data public. Vivli is one of the supported platforms to share this data going forward.

As these programs move forward, raising awareness about their importance and utility is key. "Looking ahead, we are hoping to continue to grow our repositories for Vivli and the AMR Registry to include more data, to broaden the availability of data for researchers, and to raise awareness of these platforms among the ," said Li.

More information: Rebecca Li et al, Health Data Sharing Platforms: Serving Researchers through Provision of Access to High-Quality Data for Reuse, Health Data Science (2022). DOI: 10.34133/2022/9768384

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Citation: Data sharing platform expands access to clinical trials data (2022, October 20) retrieved 3 February 2023 from https://medicalxpress.com/news/2022-10-platform-access-clinical-trials.html
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