Participant Engagement Unit

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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.