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FTDDR Registry Manager

FTDDR Registry Manager


The FTD Disorders Registry (FTDDR) LLC was founded in 2015 as a 501(c)3 nonprofit entity with the mission to curate a patient registry to

The FTD Disorders Registry (FTDDR) LLC was founded in 2015 as a 501(c)3 nonprofit entity with the mission to curate a patient registry to facilitate and advance research for the entire spectrum of frontotemporal degeneration disorders.

FTDDR seeks a Registry Manager to provide operations and administrative support to our growing organization. The candidate for this remote-based position will preferably be located in the Dallas/Fort Worth area and work under the guidance of the Registry Director. The successful candidate will be a resourceful, confident, goal-oriented, self-starter who is comfortable working with patients, caregivers, and clinical researchers.

The Registry Manager will be responsible for the hands-on Registry administration including online patient enrollment, account validation, and information requests. S/he will assist with online survey administration, preparing materials for Institutional Review Board (IRB) submission, tabulating summary statistics, and creating visual representations (charts, graphs) of basic demographics and research data. Additional duties include assisting with crafting materials for varied media channels targeted to segments of our audience, as well as assisting to develop and maintain content for the FTDDR website (

Key Responsibilities

  • Manage all aspects of participant enrollment; answer questions; guide online registration; troubleshoot errors and account access issues.
  • Error check data in the online database; verify/update participant information.
  • Maintain online survey tool administration/data collection; assist with survey development, implementation, and reporting.
  • Participate in basic data analysis and presentation preparation.
  • Represent the Registry via attendance or presentation at meetings and conferences.
  • Assist with IRB submissions; study modification applications and continuing reviews inclusive of annual enrollment/dropout tracking.
  • Assist with content development for all communication channels.
  • Co-develop engagement strategies to promote enrollment and retention.
  • Maintain and update the FTD study/clinical trial notices.
  • Co-manage data/project requests, track project logistics, and maintain online management tool.
  • Provide project management assistance across breadth of Registry activities.
  • Provide general administrative assistance such as triage information requests via phone/email, track internal license renewals, assist with new vendor selection, and assorted operations tasks.
  • Assist the Director with varied interactions with the FTDDR Management Committee and Scientific Advisory Board.

Key Requirements

  • MS strongly preferred (BS considered with post-degree clinical/research experience).
  • Strong written and oral communication skills.
  • Experience communicating scientific and technical information to a lay audience.
  • Proficiency in Microsoft® Office Suite, as well as use/learn new web-based applications.
  • Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and project management applications desirable.
  • Experience as a research assistant, study coordinator, or healthcare-related staff/volunteer is a plus.

The Registry Manager is a 40-hours-per-week, remote-based employee position. Pay rate is commensurate with experience.


Please email resume with cover letter, a brief writing sample, and salary requirements to and reference “Registry Manager” in the email subject line.

No phone calls.

The FTD Disorders Registry is an equal opportunity employer.