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 is that the Registry of the Future will only be as valuable if it contains useful information for patients. Registries receive submissions with incomplete data fields, dense jargon, and internal inconsistencies. 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 information on ClinicalTrials.gov.
In response, TransCelerate convened patient advisory boards and conducted a global online survey (N=1070) to determine patient preferences when searching for clinical trials for participation. The results of the global survey and an analysis of current ClinicalTrials.gov entries in regard to their patient friendliness can be found in a peer-reviewed journal article. The results were used to create the Clinical Trial Registration Tool that allows individual sponsors to proactively evaluate the quality of the clinical trial registration data, specifically for the “Brief Title” and the “Brief Summary” fields, that they submit to government-owned registries.
The Clinical Trial Registration Tool and “Patient preferences when searching for clinical trials and adherence of study records to ClinicalTrials.gov guidance in key registry data fields” journal article are now available! Click the “Clinical Trial Registration Tool and Global Patient Preference Information” folder below to access the assets.