Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign.

General neurologists have competing priorities, and they see patients with ALS infrequently. 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 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.