In this editorial, editors of the New England Journal of Medicine explore racial and ethnic gaps in large research studies, along with the cause and effect of such disparities. Topics discussed include lack of representation of participants from the racial and ethnic groups that are disproportionately affected by the illnesses being studied, logistic obstacles to representation, and lack of of investigators and study staff who are themselves members of minority groups. Authors also discuss changes throughout the research enterprise that are critical to addressing these disparities.
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovationh (DRDI). GLIA-CTN is funded under grant number U54NS115052 as a collaboration between NCATS and the National Institute of Neurological Disorders and Stroke (NINDS). All RDCRN consortia are supported by the network’s Data Management and Coordinating Center (DMCC) (U2CTR002818). Funding support for the DMCC is provided by NCATS and NINDS. The content of this website is solely the responsibility of the GLIA-CTN administrative coordinating center at Children’s Hospital of Philadelphia and does not necessarily represent the official views of the NIH.
