The Columbia PCC for CureGN: the Cure Glomerulonephropathy network

Columbia University Health Sciences, New York NY

Investigators

Linked publications & trials

Abstract

Cure Glomerulonephropathy (CureGN) is an NIDDK-sponsored, multi-center, international consortium established to enhance our understanding of the diverse biological causes and disease courses of the four most common forms of glomerular disease: minimal change disease, focal segmental glomerulosclerosis, IgA nephropathy, and membranous nephropathy. One of the key challenges the CureGN consortium faces is the enrollment of participants from diverse ancestral backgrounds. For example, while 19% of the U.S. population identifies as Latino or Hispanic, only 13% of the CureGN cohort is Latino or Hispanic. Additionally, retention rates among these populations remain low. Recruiting and retaining patients from underrepresented communities is essential for building a well balanced, comprehensive clinical dataset and understanding how disease progression varies across different populations. This supplement focuses on training a Clinical Research Coordinator (CRC) as a CureGN CRC, with an emphasis on recruiting and retaining participants from diverse ancestral backgrounds. To better understand the needs of underrepresented CureGN participants, we will conduct surveys and interviews with Latino patients, including both current CureGN participants and those enrolled in other glomerular disease studies at Columbia. The insights gained will be used to develop tailored recruitment and retention strategies aimed at ensuring that the CureGN patient population is reflective of current U.S. demographics. In the final stage of the supplement, we will implement the identified strategies. Additionally, we will develop a sustainable toolkit for the entire consortium to standardize effective recruitment and retention strategies for Spanish-speaking participants. These efforts will enhance overall retention rates across CureGN and strengthen the consortium’s ability to achieve its scientific goals.