Using the National Amyotrophic Lateral Sclerosis Registry as a Subject Recruitment Tool for Research (P5.077)

Abstract

Objective: To describe how the National ALS Registry links persons with ALS (PALS) to scientists who are conducting ALS research. Background: Subject recruitment for research is critical for understanding inherently fatal diseases like ALS, however, linking patients with researchers is not so straight-forward. Researchers often face challenges in timely recruitment, obtaining sufficient sample sizes, and/or in enlisting patients that meet certain eligibility requirements. Similarly, patients can face difficulties in finding specific research studies for which they are eligible. Design/Methods: The federal Agency for Toxic Substances and Disease Registry’s (ATSDR) National ALS Registry now links Registry-enrolled PALS with external scientists who are conducting ALS research. The Registry’s new online Research Notification Mechanism allows ALS researchers to upload an application that briefly describes their research study and objectives, while PALS can elect to be notified about these opportunities. If the application is approved, ATSDR then queries the Registry for PALS meeting the study’s specific eligibility criteria (e.g., age, sex), and then distributes the researcher’s study material and contact information to PALS via email. PALS have to directly contact the researcher to take part in any research. Results: Since the Research Notification Mechanism’s May 2012 deployment, approximately 96% of Registry enrollees have elected to be notified about ALS research opportunities. Additionally, ATSDR has approved a number of institutions to use the Registry for research recruitment, sending out thousands of e-mail notifications to PALS on behalf of the recruiting institutions. Conclusions: The National ALS Registry’s Research Notification Mechanism is an effective tool for linking PALS with ALS researchers who are conducting epidemiologic studies or clinical trials. The Mechanism benefits PALS by conveniently delivering timely and tailored research opportunities via email. It also benefits researchers by helping to speed-up the recruitment process, increasing the study sample size, and efficiently identifying PALS meeting specific eligibility requirements.

Disclosure: Dr. Horton has nothing to disclose. Dr. Antao has nothing to disclose. Dr. Mehta has nothing to disclose.