Reimagining the clinical trial registry

When someone is diagnosed with a life-threatening illness, they may look for a clinical research trial related to their condition. But they often find it difficult to determine if a relevant trial is open to them in their geographic region, and the language used in describing trials can be full of scientific jargon.

TransCelerate Biopharma is a nonprofit organization that brings together biopharmaceutical companies to work in a pre-competitive space on solutions that could help the whole industry. One area it has targeted for improvement is patient and clinician awareness of clinical trials through improved clinical trial registries.

To demonstrate the scope of the problem, TransCelerate conducted an informal test a few years ago, asking half the people in a room to search on the Internet for a phase 3 clinical trial for diabetes in Philadelphia. They asked the other people in the room to find a four-star luxury hotel room in Bali. “Guess who won every single time?” asks Paulo Moreira, one of the leaders of TransCelerate’s Clinical Trial Registry of the Future project. “It wasn’t even close. For the trials, it took a lot longer, and this was a room full of professionals in the field—people who know how to navigate clinicaltrials.gov. Moreira’s day job is VP of global clinical operations - external innovation at EMD Serono.

From consulting with patients and from the personal experiences of the TransCelerate team, Moreira says that he and team members have noticed a general lack of awareness around clinical research. “It is a commonly agreed upon number that less than 5 percent of patients participate in clinical research,” Moreira says. “When you conduct clinical trials, most of the money, time and effort are spent on patient recruitment, which leads to delays, lack of efficiency and increased cost.”