6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
Duke Clinical Research Institute (DCRI) |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | Our Pediatric Trials Network website and Facebook page invites parents and families to learn more about our work and become involved at sites near them. Website: http://pediatrictrials.org/how-to-get-involved/for-parents-and-families; Facebook: https://www.facebook.com/PediatricTrialsNetwork. All of the other networks mentioned in this documents also have independent websites that offer patient information and resources. The DCRI website offers information about research and opportunities to learn more through its website (https://www.dcri.org/trial-participation). In addition, DCRI is currently working on an “in-progress” collaboration that will operationalize the findings of our colleagues at the Clinical Trials Transformation Initiative (http://www.ctti-clinicaltrials.org/), a public private partnership between Duke and the FDA, to implement their patient engagement project for our pediatrics research group. Our objective is to establish a fixed patient engagement platform (rather than the current ad hoc versions) to allow input from the early design phases through the close out of a study |