Senior Research Assistant

National Organization f • Telecommuter, US,

5d • $50,000 - $60,000 • Remote

About The Position

NORD has an exciting opportunity for a Senior Research Assistant to work collaboratively with the Research Team to support and expand the IAMRARE Registry Program, which enables Patient Advocacy Groups to collect critical data to improve care and develop new and better therapies for the rare disease community. Patient-powered natural history studies are transforming how patients and caregivers shape medical research, and the IAMRARE platform makes it easy for organizations to launch a customized registry to advance the development of treatments.

Requirements

• Bachelor's degree in a relevant field (such as social sciences, life sciences, health sciences, education) and at least 2 years of experience in a research environment.
• Experience with human subjects research and IRB processes.
• Client-facing or public-facing experience and excellent verbal and written communication.
• Strong attention to detail, organization, and project management, with the ability to work independently.
• Solid technical skills, including Microsoft Office, and the ability to learn new platforms.

Nice To Haves

• Experience with survey tools such as Qualtrics or SurveyMonkey, or coding in R or SQL.
• Experience developing posters or presentations, or knowledge of rare diseases and patient registries.

Responsibilities

• Serve as a point of contact for registry partners and co-lead client onboarding meetings.
• Review study documents, protocols, and surveys during onboarding and after launch.
• Work with partners to build surveys on the registry platform and conduct QA and QC testing.
• Collaborate with partners on IRB study protocol and governance.
• Provide platform training, technical support, and follow-up to ensure complete, accurate data.
• Coordinate logistics, scheduling, and participant communications for workshops, webinars, and meetings.
• Prepare periodic reports on program activities and support interdepartmental projects.

What This Job Offers

• Job Type: Full-time
• Career Level: Senior