Our Work

Clinical Trial Distribution Network Project

New distribution capacity to optimize the exchange of standardized clinical trial information, improving patient access and matching to clinical trials and enabling all players to further innovate.

Open standards for efficiency, health equity and inclusion

Access to relevant, easy to understand and accurate clinical trial information is still a challenging endeavour

Effectively matching patients with appropriate clinical trials is a well-known challenge due to the lack of richer and standard structured data and patient accessible language for Clinical Trial registration.

The resulting burden of inaccessibility and inoperability makes it unnecessarily difficult for patients to identify and understand options for clinical trials and extends the timeframe and cost of drug development.

There are significant efforts by many to develop solutions, such as search tools and matching services that leverage AI or custom data mapping on existing unstructured data.

However, these services are proprietary and fragmented and unable to independently establish the standard structured data and plain language summaries which would broadly improve search, match, and enrichment of clinical trial information. They also build data silos and inequities as opposed to feeding and enriching an open, accessible and equitable global distribution system.

A collaborative approach integrating the existing solutions in the ecosystem 

Collective action bringing beneficiaries and data feeders together is the only way to address this issue

This project aims to address the absence of structured data standards and accessible language for clinical trial information.

Leveraging the PFMD global multi-stakeholder platform, relevant stakeholders with the knowledge and expertise can collaborate to design an architecture to capture and distribute standard structured and enriched data on clinical trials. This includes industry partners, patient organizations, data standards experts, clinical trial finders, matching services, CROs, academia/researchers, and more.

With a collaborative approach to address data source and distribution network issues and challenges, we will collectively develop a standardized and sustainable solution to meet all stakeholder and beneficiary needs, with patients at the core.

Get involved to co-create an efficient and equitable clinical trial distribution network 

A co-designed standard structure and distribution network

By creating a shared solution to the source data and distribution system of clinical trial information, this project will stimulate a shift from simply housing data and information to optimizing its interoperability and usage potential.

This will in turn empower existing tools and services, and ultimately empower patients in their search for clinical trials. This is expected in the long term to increase patients’ access to novel treatments and promote health equity and inclusion by breaking accessibility barriers, especially for those communities that traditionally do not get access to clinical trials.

Visual describing the various data flows in the project