Apply To Be A Patient/Caregiver Rep

NOTE: We are not currently accepting applications for new Patient/Caregiver Represenatives. We will update this page when we open the application process.

 

Dear Members of the Patient/Caregiver Community,

At CTTI, we engage all stakeholders, including patients as equal partners to analyze existing research impediments and recommend consensus-driven, actionable solutions that will lead to a more sustainable and effective clinical trial system.

Patients and caregivers seek rapid access to safe and effective new drugs, devices and biological products, but also want adequate data to understand the benefits and risks of these products and how they are optimally utilized. This type of information is typically acquired by conducting a randomized controlled trial. Inefficiencies in conducting trials threaten the capacity to generate the evidence needed to evaluate products, to determine best medical practice, and to compare the effectiveness of therapeutic and diagnostic alternatives.

The mission of the Clinical Trials Transformation Initiative — co-founded in 2007 by Duke University and the US Food and Drug Administration (FDA), and hosted by Duke University — is to help address this crisis by identifying and promoting practices that will increase the quality and efficiency of clinical trials.

CTTI’s approach includes conducting projects to better understand the range of current practices, assess alternative approaches, understand barriers to change, and propose recommendations for improvement. Members contribute ideas for projects, participate in their conduct and analysis, and are committed to disseminating CTTI recommendations and encouraging adoption of system changes that will improve the efficiency of clinical trials. Our membership of more than 80 organizations comprises various parties including academic research organizations, patient groups, industry, government, institutional review boards (IRBs) and investigators.

If after reviewing CTTI’s website, project portfolio, and videos you are interested in working with others to identify ways to make clinical trials more efficient and of higher quality, we invite you to apply for membership. Organizations may apply here. Ultimately the remedy for our ailing clinical research system depends on the collective effort of all constituents involved in the clinical trials process; CTTI provides an optimal venue for this collaboration. I hope you will consider applying to be a part of this exciting partnership and look forward to talking to you.

Thank you,

Pamela Tenaerts, MD, MBA
Executive Director, Clinical Trials Transformation Initiative

 

Before applying, individuals should review the following information to understand the expectations of the position:

Selection Criteria for CTTI Patient/Caregiver Representatives

Patient or caregiver with:

  • Willingness to commit time and effort to CTTI’s mission and projects
  • Understanding of clinical trial system and regulations
  • Previous experience with efforts to improve clinical trials
  • Experience working in a constructive manner with diverse stakeholders
  • Well-positioned within the advocacy community to gather input for CTTI initiatives and communicate CTTI's work to the patient/caregiver community and others within the clinical trial ecosystem
  • Public speaking skill and experience desirable

 

Expectations for Patient/Caregiver Representatives
  • Support CTTI's mission within patient advocacy communities
  • Attend and actively participate in Steering Committee meetings, webinars and conference calls
    • 2 biannual meetings in DC area (Sept/Oct and Mar/Apr, travel stipend provided)
    • Quarterly 1-hour webinars (typically over the lunch hour Eastern time)
    • Additional opportunities to provide patient voice for CTTI project expert meetings (travel stipend provided)
  • Serve as a member and/or co-lead of project teams and subcommittees
    • Attend project team calls (1-hour monthly), face-to-face and expert meetings (1-2 per yr, travel stipend provided)
  • Patient stakeholder meetings
    • Nested within biannual Steering Committee meetings and 4-6 hours of additional calls or webinars annually
  • Seek opportunities to promote CTTI’s work and engage others in implementing CTTI’s recommendations

 

Terms for Patient/Caregiver Representatives
  • 3-year term with opportunity to be extended by the Patient Rep Selection Subcommittee for 1 year based on participation and performance
  • CTTI values collaboration, constructive dialogue, mutual respect, and solution-oriented thinking. Thus, CTTI reserves the right to bring a term to close early with approval of the Patient Rep Selection Subcommittee should a representative not be a good fit with the organizational values or fail to meet the expectations listed above.
  • CTTI provides travel support for individual patient/caregiver representatives.
  • Terms begin on January 1 and end on December 31.

 

Current Patient/Caregiver Representatives
  • Cindy Geoghegan (2015 – 2017)
  • Barbara LeStage (2015 – 2018)