Participant Engagement Unit

NIH RePORTER · NIH · U2C · $533,351 · view on reporter.nih.gov ↗

Abstract

PROJECT SUMMARY – PARTICIPANT ENGAGEMENT UNIT (PEU) The PEU will be responsible for direct participant engagement to enroll patients into the Washington University (WU)-PE-CGS program. Under the direction of PIs Fields and Drake, we will leverage investigator and institution-level expertise to establish a network for direct patient engagement. We will prioritize 8 areas that are directly tied to the PEU Specific Aims: (1) find; (2) contact; and (3) consent participants; (4) obtain tumor/normal samples and clinical/meta data; (5) create and prospectively maintain patient, specimen, and ongoing treatment data; (6) report research findings directly to study participants using cutting-edge, innovative, informatics-driven methodologies that leverage unique partnerships; (7) guide patients through the “flow” of the WU-PE-CGS program, providing oversight of program-wide integration; and (8) bi-directionally interact with the other WU-PE-CGS “Units” for ongoing, iterative refinement of program-wide protocols based on prospective study of participants. To achieve success in these seven areas, we need novel paradigms for engagement. The WU-PE-CGS has developed several innovative approaches following our overall mission to “develop, implement, evaluate, and modify.” First, we have partnered with three world-class patient interest groups that have significant experience in working directly with patient-partners in advancing cancer care: The Cholangiocarcinoma Foundation (CCF), Fight Colorectal Cancer (FCRC), and The Multiple Myeloma Research Foundation (MMRF). Second, we will leverage our institution-level strengths to directly address this RFA’s stated knowledge gaps of genomically characterizing and engaging patients with tumor types (cholangiocarcinoma [CHOL]) and cancers that require more research in specific populations (colorectal cancer diagnosed under the age of 65 [CRC<65] and multiple myeloma [MM]). By studying groups that have worse incidence and prognosis we will develop insights to improve cancer outcomes for all populations. Third, we will employ bi-directional, real-time, informatics-driven methods to interact with the EOU to evaluate and iteratively refine our program to ensure that the WU-PE-CGS optimally finds, enrolls, evaluates, and interacts with the participants. The innovative and impactful aims of the PEU will address direct engagement of populations that require more research within an environment of respect and access to the academic research enterprise. Our partnerships with patient interest groups and patient-partners, leveraging of investigator and institution-level expertise, adherence to PCORI rubrics, and ongoing methodological refinement will result in impactful research across a broad group of cancer types.

Key facts

NIH application ID
10924005
Project number
5U2CCA252981-04
Recipient
WASHINGTON UNIVERSITY
Principal Investigator
Ryan C Fields
Activity code
U2C
Funding institute
NIH
Fiscal year
2024
Award amount
$533,351
Award type
5
Project period
2021-09-01 → 2027-08-31