DNDi uses SAS advanced analytics to strengthen data transparency and drive research on neglected diseases

The Drugs for Neglected Diseases initiative (DNDi) leverages SAS technology to ensure data integrity, regulatory compliance and financial transparency.

Millions of the world's most vulnerable and marginalized people suffer from neglected diseases without access to effective treatments. DNDi is headquartered in Geneva, Switzerland and was founded in 2003 by Médecins Sans Frontières (MSF), along with the Indian Council of Medical Research, the Oswaldo Cruz Foundation in Brazil, the Kenyan Medical Research Institute, the Malaysian Ministry of Health and the Institut Pasteur of France, with the participation of the World Health Organization Special Programme on Research and Training in Tropical Diseases. The reason? These diseases historically received less research attention due to limited commercial incentives, leaving a critical gap in treatment options for affected populations.

DNDi is a nonprofit, virtual R&D organization that funds and coordinates research with pharmaceutical companies, generic drug manufacturers and academic institutions to develop life-saving treatments. Since its founding, DNDi has successfully delivered treatments for diseases like sleeping sickness, Chagas disease and hepatitis C, improving health care for some of the world's most vulnerable populations.

Why data integrity is critical in pharmaceutical research

Data is the foundation of pharmaceutical research. Every clinical trial, regulatory submission and treatment decision relies on accurate, complete and verifiable data. Ensuring data integrity is not just about efficiency – it directly impacts patient safety, regulatory approval and global health policy.

The challenge is even greater for DNDi, which develops treatments for neglected diseases in low-resource settings. Research takes place in diverse environments, from major academic institutions to remote clinics. The data collected must meet the same rigorous standards as those of large pharmaceutical companies, ensuring the safety and efficacy of treatments.

Bringing data credibility and regulatory compliance with SAS

Pascal Carpentier, Information Systems and Technology Director at DNDi, has a critical mission: ensuring data security, integrity and compliance while managing an NGO-sized budget. DNDi operates in over 10 countries, yet its data management requirements match those of major pharmaceutical companies.

"Our challenge is to provide pharma-grade information systems with the budget of an NGO. SAS allows us to maintain data credibility and comply with international regulatory standards, ensuring that our research translates into real impact on global health," says Dr. Carpentier.

By implementing SAS, DNDi standardized, verified and cleaned its data. With SAS analytics, DNDi further ensures data-driven transparency, regulatory compliance and better research outcomes while supporting its mission to make treatments affordable and accessible worldwide.

Regulatory reporting and financial transparency with SAS

Each year, DNDi receives funding from governments and global health organizations, which require transparent, verifiable reporting on how their contributions are used. To meet this need, DNDi reports every financial transaction through the International Aid Transparency Initiative, a standardized framework designed to track and publish financial data on aid projects. Ensuring transparency, accountability and responsible resource allocation, it helps build trust with donors and stakeholders across the development sector.

To further strengthen this commitment to transparency, DNDi leverages SAS data management capabilities to automate financial reporting, extract and anonymize ERP data and deliver clear, real-time insights into spending. By integrating SAS data management, DNDi not only enhances efficiency but also ensures full compliance with funding requirements, reinforcing donor confidence in how resources are managed.

"Our financial reports must show exactly where and how every euro is spent. SAS provides us with a reliable system to automate and validate these reports, meeting the strict requirements of major donors like the UK and Dutch governments," explains Dr. Carpentier.

In this context, DNDi has also benefited from the SAS Data for Good program, which provides advanced data management support to organizations addressing critical global challenges. Through this initiative, SAS experts have worked pro bono to enhance DNDi’s regulatory reporting and financial transparency, ensuring that donor funds are accurately tracked and responsibly reported. “SAS is committed to accelerating breakthroughs in life sciences with data and AI, including rare and neglected diseases. The work of DNDi impacts millions of lives around the world, and we are proud to partner with their efforts to deliver life-changing therapies to markets safely and efficiently,” said Jonathan Riches, Head of Life Sciences Europe.

Advancing clinical research with SAS analytics

At DNDi’s biostatistics center in Kenya, researchers process massive amounts of clinical trial data to evaluate the safety and efficacy of new treatments before submitting findings to regulatory bodies like the U.S. Food and Drug Administration and European Medicines Agency. In the past, DNDi used open-source solutions like R, but later adopted SAS to align with industry standards.

"Clinical research is all about statistics. SAS, as the gold standard in analytics, provides us with a proven platform to process trial data, validate results and meet the highest regulatory requirements," Dr. Carpentier says.

Exploring AI in drug discovery

DNDi is actively exploring AI-driven drug discovery to accelerate compound screening, identify promising drug candidates and optimize clinical trials. However, integrating AI in clinical research presents regulatory challenges.

"AI is promising in clinical trial development, but regulatory frameworks are still evolving. We closely monitor industry developments and will adopt AI-based analytics when they become proven and validated," says Dr. Carpentier.

The future of neglected disease research

Despite DNDi’s success, challenges remain. As global funding shifts and neglected diseases increasingly affect new regions due to climate change, DNDi must secure sustainable funding sources. The rise of vector-borne diseases like dengue in Europe and North America is bringing new attention to DNDi’s work. 

To sustain long-term research, DNDi is strengthening public-private partnerships, exploring innovative funding models and expanding its use of advanced analytics. However, the scale of these challenges requires more than individual efforts. Collaboration – especially the pooling of resources and expertise across organizations – is essential to reaching the critical mass needed for impact. By fostering partnerships and mutualizing efforts, DNDi and the broader global health community can accelerate innovation and ensure treatments reach the most vulnerable populations. 

"We are committed to driving research forward for those who have been forgotten by the market and public sector," Dr. Carpentier concludes. "With SAS, we can ensure data security, regulatory compliance and ultimately, deliver better treatments for patients who need them most."