Increasing patient self-enrollment in the National Amyotrophic Lateral Sclerosis Registry: lessons learned from a direct to provider campaign

Affiliates Lindsay Rechtman  [1] , Heather Jordan [2], Wendy Kaye [1], Maggie Ritsick [1], Paul Mehta [3]


[1] McKing Consulting Corporation
[2] Department of Social and Behavioral Health Sciences, School of Public Health, Rutgers
[3] Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Services

Journal Journal of Patient Experience
Summary This study sought to evaluate educational and promotional outreach activities to general neurologists and to increase self-enrollment of PALS in the National ALS Registry. 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. However, engaging the support staff of busy specialists can help increase research response rates and information distribution. The lessons learned from this project can be applied to other rare conditions and disease specialists.
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