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Clinical Research Access & Information Exchange

Rationale

The Clinical Research Access & Information Exchange Initiative targets TransCelerate’s strategic priority of improving the patient experience by better informing patients.

The links between available information about clinical trials and the potential trial participants are often missing or broken, and this is further complicated by the fact that available clinical trial information often lacks utility for the average patient. Existing infrastructure used to host and disseminate clinical trial information can be very complex and difficult to navigate. Furthermore, when patients do enroll in clinical trials, they do not always have access to valuable information about their clinical trial participation.

Clinical Research Access & Information Exchange seeks to provide a better window into information about clinical research and trial options while also contribute to a more rewarding clinical trial experience via better exchange of information with trial participants.

Benefits

We ultimately expect to facilitate:

  • Simpler, user-friendly clinical trial information search / navigation on clinical trial registries
  • More meaningful information (and data) exchanges between clinical researchers and trial participants before, during, and after trial participation
  • Better engaged and educated public (including patients and health care professionals) with respect to clinical trials

Available Assets

The following assets will be delivered by this initiative:

  • Position paper examining the value and potential options for making it easier for potential clinical trial participants  to contact individual site locations through government clinical trial registry listings
  • Published proposal and proof of concept illustrating patient-focused improvements for adoption by government clinical trial registries (Clinical Trial Registry of the Future)
  • Position paper examining the value and key principles associated with improved information exchange between researchers and trial participants

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