The European & Developing Countries Clinical Trials Partnership (EDCTP), Novartis, and TriNetX, LLC have joined forces to support research capacity development in Sub-Saharan Africa (SSA). Within the framework of EDCTP’s Regional Networks of Excellence, the three partners are launching the pilot phase of a joint initiative aimed at supporting healthcare organizations (HCOs) in SSA.
The goals of the framework are:
- Enhance local research capabilities and R&D team efficiency through easy compiling, analyzing, and sharing of routinely collected hospital and patient data through adaptation of digital technologies.
- Increase suitability for collaboration with industry and academic partners in clinical research through sharing curated data in a standardized, secure, and compliant.
- Expand the clinical trial footprint sustainably to grant more patients from SSA access to clinical trial opportunities and promote health equity across regions.
“This tripartite collaboration exemplifies the value of strategic public-private partnerships aimed at bridging important unmet research and capacity gaps. This joint initiative will develop critical data science capacity that is part of the mega-trend of digital transformation in Africa, enabling high-quality research and innovation to drive evidence-based policies and good practices across the continent.’’
—Dr. Michael Makanga, EDCTP Executive Director
Primary Objectives
The primary objective of the EDCTP-Novartis-TriNetX joint initiative on digital data capabilities is to help HCOs in SSA improve engagement with pharmaceutical companies and contract research organizations to increase the number of industry-sponsored clinical trials that will be available to the HCOs and their patients.
The initiative is facilitated through TriNetX’s cloud-based federated global health research platform, which provides HCOs with leading-edge analytical tools that allow researchers to:
- Easily query structured and unstructured patient data for a plethora of local use cases.
- Quickly gain real-time responses and insights into pseudonymous/de-identified patient populations.
- Efficiently improve the design, recruitment, and execution of clinical trials.
HCOs receive access to the platform as well as training at no cost, and while their data remain securely stored behind a firewall, they can be queried for real-time access to the patient population.
“TriNetX is the largest and fastest growing research network comprised of healthcare organizations and life sciences companies from all over the world. Members of the TriNetX Network can leverage global, harmonized, and de-identified real-world data in a secure and compliant environment to support investigator-initiated research, scientific publications, collaboration with industry and academia, clinical trial optimization, e.g., protocol design, feasibility, site identification/selection, patient identification for trial recruitment, safety signal detection and management, and real-world evidence generation. I am thrilled to welcome our newest members in Sub-Saharan Africa and to help maximize the impact of their contributions to the global research community.”
—Gadi Lachman, CEO and Founder of TriNetX, LLC
Participating Healthcare Organization Pilots
Joint activities of TriNetX, EDCTP, and Novartis were kicked off in April 2022 through a workshop involving HCOs from the four EDCTP Regional Networks of Excellence. These networks encompass multiple institutions in SSA countries, as well as European partners, with the aim of strengthening regional networking and providing platforms for research training and multicenter studies. More than 60 HCOs followed the invitation, and two HCOs are currently spearheading the pilot:
Noguchi Memorial Institute for Medical Research, College of Health Sciences, University of Ghana, Ghana
“The UGMC is excited to join the TriNetX family. This initiative will add tremendous value to our electronic medical records and enable our clinicians and scientists to have a well-curated data set for patient-related research. With our modern clinical trial facilities, the system also affords UGMC visibility in the international clinical research community and opens the possibility for us to be an active site for trials. We hope that when the system is fully functional, the current era whereby West Africa is largely excluded from most international clinical trials will come to an end.”
—Prof. George Kyei, Director, Medical and Scientific Research Centre, UGMC
Biomedical Research and Training Institute, Zimbabwe
“Introduction of a strategic real-world data platform and research network by TriNetX will strengthen our clinical research capacity and linkages with potential collaborators to produce high-level outputs for evidence-based advocacy that influence policies to improve healthcare in SSA.”
—Dr. Junior Mutsvangwa, Senior Clinical Research Scientist, Biomedical Research and Training Institute, Zimbabwe
The pilot phase of the initiative is expected to span from April to October 2023 and will focus on establishing the necessary infrastructure at the selected two pilot HCOs and integrating their data into the TriNetX platform. Upon successful demonstration of the adoption of the digital data infrastructure and its added benefits during the pilot phase, it is hoped that the initiative can be expanded beyond the pilot HCOs and scaled up across SSA, leveraging networks across the continent through regional partners and bringing on additional sponsors to maximize impact.
Members of the public-private partnership are scheduled to present the value of investing in research and development and digital solutions to address unmet medical needs in Africa at the upcoming United Nations General Assembly (UNGA) Science Summit, taking place on 14 September 2023 from 9:00 am to 11:30 am ET in New York, NY, United States. Registration is open for in-person and virtual attendance at: https://sched.co/1Ocmv
More information
European & Developing Countries Clinical Trials Partnership (EDCTP)
The mission of the European & Developing Countries Clinical Trials Partnership (EDCTP) is to reduce the social and economic burden of poverty-related diseases in developing countries, particularly sub-Saharan Africa, by accelerating the clinical development of effective, safe, accessible, suitable, and affordable medical interventions for HIV/AIDS, tuberculosis, malaria, neglected infectious diseases, lower respiratory tract infections, diarrhoeal diseases and infectious diseases of epidemic potential, including Ebola and COVID-19. EDCTP is supported by the European Union under Horizon 2020, its Framework Programme for Research and Innovation. Find out more at: www.edctp.org
TriNetX, LLC
TriNetX is a global network of healthcare organizations and life sciences companies driving real-world research to accelerate the development of new therapies. Through its self-service, HIPAA, GDPR, and LGPD-compliant platform of federated EHR, datasets, and consulting partnerships, TriNetX puts the power of real-world data into the hands of its worldwide community to improve protocol design, streamline trial operations, refine safety signals, and enrich real-world evidence generation. For more information, visit TriNetX at www.trinetx.com or follow @TriNetX on Twitter.
Noguchi Memorial Institute for Medical Research (NMIMR)
The Noguchi Memorial Institute for Medical Research (NMIMR), established in 1979 as a semi-autonomous institute of the University, is the leading biomedical research facility in Ghana. Our mission is to improve the health and well-being of Ghanaians and mankind through focused and relevant quality biomedical research, human resource development, and support of national public health activities. Find out more at: https://noguchi.ug.edu.gh
Biomedical Research and Training Institute (BRTI)
The Biomedical Research and Training Institute is an internationally recognized not-for-profit organization that conducts biomedical and health-related research and training in Sub-Saharan Africa. We are a center of excellence for health research and training that has a mission to promote the health and well-being of the people of Southern Africa. BRTI is a member of the Trials of Excellence in Southern Africa (TESA), which is funded by EDCTP. The BRTI also partners with several regional and international funders. Find out more at: https://brti.co.zw