Impact of the National Amyotrophic Lateral Sclerosis Registry: Analysis of Registry‐funded Research

Abstract

Objective: This research aims to examine the impact of the National Amyotrophic Lateral Sclerosis (ALS) Registry-funded research activities. Methods: Registry-funded research and related publications were identified through the National ALS Registry website, the National Institutes of Health (NIH) Reporter website, and verified by Principal Investigators. Key study characteristics (e.g., study population, sample size) and key impact features (e.g., risk factors) were abstracted and recorded on study abstraction forms. Descriptive statistics were used to analyze the volume, productivity, and findings of the Registryfunded research. Results: Since 2012, the National ALS Registry funded 21 research projects. Of these, 14 were through extramural research grants and included in the analysis. These studies are often related to environmental, medical conditions, and genetic risk factors. On average, the funded grants produced 1 to 2 publications which were cited 114 times by other researchers. The relative citation ratio averaged 1.81 with a weighted relative citation ratio of 16.28. These studies supported the identification and confirmation of candidate risk factors. Environmental and occupational risk factors typically related to heavy metal exposure (e.g., lead, mercury) and agricultural chemicals (e.g., pesticides, herbicides), and the occupations associated with exposure to these substances were most frequently explored. Interpretation: The National ALS Registry is a multifaceted research platform, one component of which is funded research. This Registry-funded research fills an essential gap in the overall ALS scientific community as it is difficult to prevent and treat a disease without a deeper understanding of its causes.

The positive impact on translational research of Fondazione italiana di ricerca per la Sclerosi Laterale Amiotrofica (AriSLA), a non-profit foundation focused on amyotrophic lateral sclerosis. Convergence of ex-ante evaluation and ex-post outcomes when goals are set upfront

“…Recently, the National Amyotrophic Lateral Sclerosis Registry, an academic initiative established by the federal Agency for Toxic Substances and Disease Registry, which is part of the Centers for Disease Control and Prevention, published an analysis of the impact of the Registry-funded ALS research, using the RCR and the ToB for their bibliometric assessment too (Rechtman et al, 2022). Interestingly, in addition to examining the direct results of their funded research, the authors extended the bibliometric analysis to the publications citing their articles, commenting on the impact their Registry-funded projects had in influencing other research to amplify the progress of knowledge.…”

“…The Web of Science Core Collection TM by Clarivate TM provided a list of peer-reviewed publications acknowledging AriSLA funds, as well as their level of influence by the scientific community in the Web of Science Citation Report. In addition, a bibliometric international benchmark analysis was conducted using the relative citation ratio (RCR) metric provided by the iCite platform of the NIH Office of Portfolio Analysis (Santangelo, 2017; iCite | New Analysis | NIH Office of Portfolio Analysis ) This tool is adopted by the NIH and other main research institutes, particularly in the United States for the analysis of their investment (Santangelo, 2017;Surkis and Spore, 2018;Rechtman et al, 2022), or by learned societies for comparison of research productivity amongst academic faculty (Reddy et al, 2020;Dijanic et al, 2022;Patel and Ali, 2022). However, its use by funding agencies and charities for international benchmark is still rather limited, or at least this information is not easily accessible.…”