FTD Disorders Registry Manager

Are you looking to make a difference in the world?

Looking to take the next step in your career with an impactful organization helping people?

Join the FTD Disorders Registry (FTDDR), LLC, a non-profit entity working to accelerate the science towards treatments and cures for the most common cause of dementia under 60, known as FTD, and including diagnoses of behavioral variant FTD, primary progressive aphasias, FTD-ALS, corticobasal syndrome, and progressive supranuclear palsy. We advance research by providing tools and resources to help people learn about research opportunities, to collect and share data to advance the science, and to amplify the voice of the patients’ and families’ lived experience. All Registry staff are hired as employees and team members of The Association for Frontotemporal Degeneration (AFTD), an affiliated non-profit that co-founded and manages the Registry as an LLC. AFTD is the leading organization dedicated to ending FTD. We help families affected today, and drive research to bring hope for the future.

Overview

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 (FTD) disorders. FTDDR seeks a Registry Manager to provide administrative and person-centered support to our growing organization. The successful candidate will be a collaborative, goal-oriented self-starter energized by our non-profit mission and comfortable working directly with patients, caregivers, and clinical researchers.

Job Summary

The Registry Manager will be responsible for providing direct support to people participating in our online Registry, responding to inquiries and information requests and supporting participant enrollment, as well as reviewing the data for accuracy. They will develop and implement mechanisms to collect insights and data to drive continuous improvement of the Registry participant experience. They will assist with online account creation, survey administration, preparing materials for Institutional Review Board (IRB) submission, tabulating summary statistics, and preparing scientific abstracts and other Registry materials with visual representations (charts, graphs) of research data. The Registry Manager will propose and execute strategies to engage and retain participants who represent a wide breadth of ethnocultural, socioeconomic, and geographic backgrounds.

FUNCTIONAL RESPONSIBILITIES

Essential Job Functions

• Registry Database Administration and Support:
  • Support participants in all aspects of their online experience: answering questions; guide online registration; troubleshoot errors and account access issues.
  • Identify, track, and report on data quality/common user issues. Propose solutions for resolution in a timely manner and implement agreed upon solutions.
  • Develop and implement feedback mechanisms for the Registry and serve as the liaison to KOLs, participants, and other stakeholders when Registry feedback is solicited.
• Departmental Support:
  • Maintain online survey tool administration/data collection; assist with survey development, implementation, and reporting.
  • Assist in identifying appropriate engagement tracking metrics and reporting metrics weekly.
  • Assist with IRB submissions; study modification applications and continuing reviews inclusive of annual enrollment/dropout tracking.
  • Assist with content development for all communication channels including but not limited to the FTD Disorders Registry website, www.FTDregistry.org.
  • Under the direction of the Registry Director, collaborate with the Registry Communications Manager to develop and implement strategies to better recruit, engage, and retain Registry participants.
  • Assist the Director with varied interactions with the FTDDR Management Committee and Scientific Advisory Board.
  • Participate in basic data analysis and presentation preparation.
• Organization Support:
  • Identify and execute tactics to increase representativeness and overall Registry participation.
  • Develop and lead a standing focus group of Registry participants and other advocacy stakeholders to provide guidance about the Registry platform and future Registry initiatives.  
  • Collaborate with AFTD colleagues and other partners on Registry promotion efforts, webinars, and assigned projects.

 Other Job Functions

• When needed, co-manage data/project requests, track project logistics, support project management across the breadth of Registry activities, assist in new vendor selection, and other operational tasks.
• Represent the Registry via attendance or presentation at community events, meetings and conferences.
• Prepare content and present on Registry webinars and training sessions.

SUPERVISORY RESPONSIBILITIES

• This position is an individual contributor and does not have any supervisory responsibilities.

Knowledge, skills, and abilities required for this role:

Education:

• Bachelor’s degree, master’s degree, or nursing degree with post-degree clinical/research experience.

Experience:

• 2 - 5 years of relevant experience in patient/participant facing experience strongly preferred, with emphasis on people with progressive and/or neurological conditions
• Experience communicating scientific and technical information to a lay audience.
• Experience as a research assistant, study coordinator, or healthcare-related staff/volunteer is a plus.

Special Knowledge/Skills:

• Strong written and oral communication skills. Multilingual skills, particularly in Spanish, is a major plus.
• Proficiency in Microsoft® Office Suite, as well as use/learn new web-based applications.
• Familiarity with database/CRM software (Salesforce), survey software, and project management applications (Monday.com) desirable.

Travel:

• Travel for up to 15-20 days throughout the year as needed for meetings, conferences, team and community events.

ADDITIONAL INFORMATION

Interview Process

• Submit an application, including cover letter and resume
• Phone screen with a member of AFTD’s HR department
• Interview with Hiring Manager
• Team interview with department staff
• Offer made to final candidate (contingent on reference and background checks)
• Additional interviews or assessments may be required dependent on position        

AFTD Awards

• Platinum Transparency 2024 by GuideStar, an organization that collects and publishes IRS-verified data about charitable organizations, issuing Seals of Transparency based on how much information each charity provides
• 4-star rating on Charity Navigator, an organization that assesses nonprofits’ organizational effectiveness through IRS filings and metrics such as, Impact & Results, Accountability & Finance, Culture & Community, and Leadership & Adaptability

Benefits and Perks

AFTD offers a competitive salary and is committed to providing a comprehensive benefits package to meet the needs of our employees and their families, including:

• Medical, Dental and Vision insurance for eligible employees regularly working 30 hours or more per week – presently AFTD covers 100% of employee individual medical coverage
• Basic Life Insurance/AD&D
• Company-paid short-term and long-term disability insurance
• Identity Protection
• Voluntary Term Life/AD&D
• Hospital Indemnity, Accident and Critical Illness insurance
• Pet discount program
• Employee Assistance Program
• SIMPLE IRA with company match
• Generous paid vacation and sick time
• 10 paid holidays
• 4 weeks paid parental leave
• A company culture that encourages work/life balance
• Ongoing team building opportunities, including staff retreats and days of service
• Ongoing professional development training and opportunities
• Business casual dress code

AFTD is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status.  All of your information will be kept confidential according to EEO (Equal Employment Opportunity) guidelines. 

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