Patient Engagement

TrialScope’s mission to standardize clinical trial follow-up

In a survey of 213 clinical trial participants, 96.7 percent wanted to know the results of their study, yet only 8.9 percent had been able to find out. The huge disconnect led to the formation of TrialScope, an independent repository for information about completed trials.

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In the world of clinical trials, many life science companies will love you and leave you. They take the data and the clinical notes, with no effective feedback loop or post-study engagement. 

It’s a missed opportunity for everyone involved. 

Enter TrialScope. Based in Jersey City, New Jersey, TrialScope is working to provide a central platform for patients to access information about their clinical trial weeks, months or years after it was concluded.

As it stands, there is little standardization. Some companies upload details to their website, other’s assign the communication to the physicians running the trial, said TrialScope CEO Mark Heinold in a phone interview. It’s complicated and messy for patients.

“They need one source and one place to go, where they know it’s not going to be a manufacturer promotion and they can understand in a lay person’s language what the study concluded,” he explained.

A 2012 publication by the Center for Information and Study on Clinical Research Participation (CISCRP) reported that in a survey of 213 trial participants, 96.7 percent wanted to know the results of their clinical trial, yet only 8.9 percent had been able to find out even though technical results had been posted to ClinicalTrials.gov for over two months.

Another study found that once their part is over, most trial participants feel they are “no longer valued” by researchers.

At some point, legislation may catch up and mandate better follow-up for clinical trials, Heinold said.

TrialScope has a head start, with the launch of its Trial Results Summaries Portal in late February. It was developed in partnership with AstraZeneca, which will serve as the pilot sponsor for the portal.

Heinold described the platform as a destination for patients to understand what happened with their study in layman’s language. The summaries include the purpose, results, and other facts about the trial. Recognizing the global nature of research, the findings are translated into the local language used at every trial site. It would be cumulative, as later-stage trials are added upon their completion.

There is no mechanism for patients to ask questions or share experiences at this point, though Heinold noted that the platform is constantly evolving. Right now the emphasis is on getting industry and academic partners on board, while maintaining absolute transparency.

“What we’re trying to accomplish here is transparency of information based on the clinical trials that have been run,” he said. “It’s transparency to the medical community as well as transparency to the patient community.”

Patient engagement shouldn’t stop as soon as their information has been extracted.

As the NIH states, “It is critical that scientists also become knowledgeable about how to reach and communicate in their communities before, during and after a trial. Educating the public about clinical research may help raise general awareness about the important role this research plays in safeguarding health and quality of life, but these efforts are only the beginning.”

Photo: XtockImages, Getty Images

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