Designed with patients, for patients.
TransCelerate’s Clinical Research Access & Information Exchange Initiative aims to help the industry better inform patients by facilitating improved touchpoints with information about clinical research and specific clinical trial opportunities.
TransCelerate’s solutions are designed through collaboration with multiple stakeholders across the ecosystem. Specifically, we have led a series of iterative design workshops to co-create our Clinical Trial Registry of the Future concept in partnership with patients. We have and will continue to obtain and incorporate important perspectives from patients, clinical trial sites, healthcare providers, and government agencies.
Learn how you can further contribute to:
- Enabling patient-focused enhancements to government-owned clinical trial registries
- Improving patients’ options for contact with investigative sites
- Improving information exchange with patients before, during and after clinical trial participation
What we’ve come to learn and appreciate through this process is that the Registry of the Future will only be as valuable to patients as the data it contains is informative and useful. Today, registries receive submissions with incomplete data fields, dense jargon, internal inconsistencies and other issues of data quality. As a result, the National Institute of Health, which maintains ClinicalTrials.gov expressed concerns over data quality to TransCelerate, as this could be a barrier for patients accessing meaningful information on ClinicalTrials.gov. This led us to create the Clinical Trial Registration Tool that individual sponsors can use to proactively evaluate the quality of the clinical trial registration data they submit to government-owned registries.
We are seeking comment from additional industry stakeholders to affirm that the Clinical Trial Registration Tool could help improve clinical trial registration data, specifically for the “Brief Title” and the “Brief Summary” fields. The public comment period will run through November 22, 2019. Please select the dropdown for the Public Comment Period.