Rutgers School of Public Health alum, Dr. Lindsay Rechtman, along with colleagues who include current Rutgers School of Public Health PhD candidate, Ms. Heather Jordan, conducted targeted educational and promotional outreach activities to general neurologists with a goal of increasing self-enrollment of persons with amyotrophic lateral sclerosis (ALS) in the National ALS Registry (Registry).
ALS, also known as Lou Gehrig’s disease, is a rare, fatal neuromuscular disorder. While the causes and risk factors of ALS are largely unknown and under investigation, much work has been conducted worldwide to better understand the epidemiology of the disease.
In the United States, the congressionally-mandated Registry, launched in 2008, is maintained by Agency for Toxic Substances and Disease Registry (ATSDR). The main goals of the Registry are to better describe the incidence and prevalence of ALS, to examine risk factors that might be associated with the disease, and to better outline demographic factors associated with the disease. The Registry uses two approaches to identify ALS cases; the application of a validated algorithm to national administrative databases and a voluntary, Internet-based, patient self-enrollment web portal.
Web portal self-enrollment is a critical component of the Registry in that those that self-enroll are then eligible to elect to receive research notifications, enroll in the Biorepository, access resources, and complete the web-based risk factor survey modules. Further, all cases of ALS do not appear in the national administrative databases. The self-enrollment feature is critical in order to capture those missing cases, thus allowing for a more precise calculation of the prevalence of disease. Continuous marketing through educational and promotional outreach activities is critical to the success of the self-enrollment component of the Registry
The researchers created a multicomponent project to educate neurologists about the Registry and to increase Registry self-enrollment. Project components consisted of phone calls, mailings, train-the-trainer presentations, and key informant interviews. Project-specific metrics, continuing education enrollment, and Registry self-enrollment data were analyzed to measure project efficacy. Their results indicated that sending targeted mailings to providers about the Registry was an effective method to disseminate materials, however, they were unable to attribute any changes in the frequency at which ALS patients were informed of or self-enrolled into the Registry. It appears as though general neurologists can serve as an information liaison to patients, but they may not be best suited to dedicate time and resources to facilitate the self-enrollment process, perhaps due to the infrequency of seeing patients with ALS, limited time with each patient, or lack of resources available.
“General neurologists have competing priorities, and they see patients with ALS infrequently,” comments Dr. Rechtman. “Neurologists could be the appropriate channel to distribute Registry information to patients, but they are not the appropriate resource to assist patients with self-enrollment. Engaging the support staff of busy specialists may help increase self-enrollment rates and Registry information distribution.”
Dr. Rechtman received her DrPH from the Rutgers School of Public Health in 2017. She is currently at McKing Consulting Corporation.
“Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign,” was recently published in the Journal of Patient Experience.