# Participant Engagement Unit

> **NIH NIH U2C** · YALE UNIVERSITY · 2021 · $2,999,293

## Abstract

PROJECT SUMMARY: PARTICIPANT ENGAGEMENT UNIT (PEU)
Traditional epidemiological methods used to recruit patients with rare diseases such as LGG, who are
geographically widely spread, into research cohorts is costly, labor-intensive and time-consuming. Thus, there
is a need for alternative methods that include 1) engagement with patient stakeholders, 2) partnership with
patient organizations and 3) use of web-based collection methods and social media platforms. Using these
tools our group created the International Low Grade Glioma (LGG) Registry, the overarching goal of which is to
allow for focused study of LGG. In this Patient Engagement Unit and in collaboration with our Engagement
Optimization Unit (EOU) we will learn from pilot data drawn from the LGG Registry to refine effective means to
engage patients and other stakeholders in the development of messages, materials, and protocols for
recruitment, enrollment, and retention in the LGG Registry and use these means to 1) enroll 700 LGG patients
with recurrent disease into the International LGG Registry, 2) collect epidemiological, clinical, and outcome
data as well as constitutional (blood/saliva) and paraffin-embedded tumor specimens for these 700 LGG
patients and 3) communicate overall study and individual level results (including those performed by the
Genomic Characterization Unit) to the 700 LGG patients.

## Key facts

- **NIH application ID:** 10294464
- **Project number:** 1U2CCA252979-01A1
- **Recipient organization:** YALE UNIVERSITY
- **Principal Investigator:** Elizabeth B. Claus
- **Activity code:** U2C (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $2,999,293
- **Award type:** 1
- **Project period:** 2021-09-21 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10294464

## Citation

> US National Institutes of Health, RePORTER application 10294464, Participant Engagement Unit (1U2CCA252979-01A1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10294464. Licensed CC0.

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