While half of all clinical trial results are never published, a new collaboration between Ben Goldacre’s OpenTrials and Open Knowledge International aims to change all that. By piecing together data from a variety of disparate sources, the OpenTrials initiative hopes to put the best evidence-based research in one place, thereby increasing scientific collaboration, and bringing new treatment options to those that need them most. But what does this all mean for patients?
Historically, the clinical trial landscape hasn’t been very patient friendly and navigating it as a patient has been akin to guiding a boat without a rudder–you’re simply adrift in a sea of incomplete data and clinical terminology. Even with a background in the industry, it’s virtually impossible to find all the information you’re looking for in one place. Imagine the frustration of a patient looking to find a novel treatment for their disease, stymied every step of the way.
OpenTrials is launching with the goal of making it easier to find clinical trial data. Patients can search for studies relevant to their interests and look up results of previous trials. If they look promising, patients can reach out to the study sponsor to learn more. Alternatively, if a study looks interesting but results are missing, patients can request that the sponsor publishes the missing data.
Of course, collaboration is nothing new in the clinical research space. For the last four years, TransCelerate has worked across the biopharmaceutical community to standardize trial data; improve transparency; increase awareness, and diversify trial participation. Recently, these efforts have led to a coherent set of recommendations for publishing clinical trial results in plain language everyone can understand.
Thanks to OpenTrials, TransCelerate, and others, the clinical trial industry is becoming more open, honest, collaborative, and patient-friendly than ever before.
About the Author:
Health policy work by training and clinical researcher by trade, Richie is Director of Life Science Business Development here at ePatientFinder. Prior to joining The Tribe, Richie worked for a direct to patient recruitment company, two of the largest CROs in the world, and, most recently, a network of high-performing research sites. In each of these roles, he worked to drive study recruitment and bring new drugs and devices to market ahead of schedule.
The post Sharing is Caring: Data Sharing and Transparency in Clinical Trials appeared first on ePatientFinder®.