FTD Disorders Registry Program Manager - ALLFTD Liaison

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.

Job Summary

The Program Manager – ALLFTD Liaison oversees Registry-based support for the ALLFTD study, including participant enrollment, remote data collection, reporting, communications, and platform coordination. The role blends project management, stakeholder engagement, data oversight, and participant support, with a strong emphasis on collaboration, transparency, and continuous improvement.

The successful candidate will be a proactive, detail-oriented self-starter who is comfortable working across research teams, vendors, and the FTD community, interested in the power of remote clinical research tools to enable more inclusive, less burdensome research, and who is motivated by AFTD’s mission to accelerate research and elevate the voices of those impacted by FTD.

FUNCTIONAL RESPONSIBILITIES

Essential Job Functions

The Program Manager will assist the Registry Director in identifying potential program partners and assessing their fitness to the Registry’s goals and objectives. They will work with approved partners to develop the appropriate tools within the Registry platform to meet the project objectives and oversee the technical build of these tools with our IT platform vendor. They will implement project plans, assess project risks, and report progress to stakeholders. The Program Manager will also develop and implement strategies to enhance research impact and visibility, including conducting research projects using Registry or partner data, and working with the Communications Manager to disseminate research findings.

Organize and lead program-wide coordination for Registry operations for the ALLFTD study.

• Primary point of contact for ALLFTD teams (study coordinators, clinicians, etc.). The liaison will create training materials, train and re-train study team members as needed, and aid study team members with data entry (like sending reminders and creating a supportive space for study teams). They will provide additional support as needed to the study teams to facilitate the registry platform’s role in the ALLFTD study.
• Maintain alignment between Registry and ALLFTD goals and ensure seamless collaboration.
• Respond to inquiries from Registry participants and ALLFTD participants and study staff in a professional and timely manner and ensure a user-friendly, respectful experience for all participants.
• Organize and lead project meetings, workshops, and presentations, including ALLFTD weekly, ALLFTD All Hands and monthly conference call with ALLFTD project managers.
• Manage all aspects of ALLFTD study participant enrollment; guide online registration, validate accounts, troubleshoot errors and account access issues.
• Identify, track, and report on data quality/common user issues and propose solutions for resolution or assign these to the appropriate party for resolution
• Maintain online survey tool administration/data collection for ALLFTD specific tasks including,
  • monitor survey completions and send non-responder interval reminders,
  • aggregate and report results,
  • assist with survey development and implementation as needed.
• Tabulate summary enrollment statistics on interval basis including comparison of de-identified enrollment roster with ALLFTD.
• Track ALLFTD project deliverables rigorously; create shareable tracking matrix; routinely provide status updates to Registry Director
• Collaboratively define and refine the scope of work in early phases to ensure alignment with business goals and ALLFTD needs.
• Collaborate with ALLFTD teams to anticipate operational needs and offer platform-based solutions that reduce manual burden and improve data integrity.
• Coordinate meeting and agenda of the FTDDR quarterly webinar series for ALLFTD Study Coordinators.
• Collaborate with study teams to compile key metrics, timelines, and narrative summaries that align with grant reporting requirements, ensuring timely and accurate submission of progress reports and renewal applications.
• After review with Registry Director, provide report updates to ALLFTD project managers.
• Work closely with the Registry Communications Manager to develop study tools and notifications to support ALLFTD study goals.

Organize programs and initiatives to support the missions, goals and objectives of the Registry.

• Collaborate with external researchers and institutional partners to support study recruitment and data access.
• Maintain documentation of research collaborations and ensure data use complies with established policies.
• Participate in basic data analysis and presentation preparation; represent the Registry via attendance or presentation at meetings and conferences.
• Assist with outreach/engagement content development for all FTDDR communication channels, inclusive of co-developing engagement strategies to promote retention.
• Assist with strategic project planning, preparation of grant deliverables, and progress reporting to funders and stakeholders.
• Provide supplemental project management assistance across breadth of Registry activities, including cross-training on general Registry enrollment validation procedures.
• Propose potential research projects reviewing fit-for-purpose data, designing or selecting data collection instruments when needed, implementing collection, analyzing, and presenting at scientific conferences, co-authoring abstracts and/or papers for publication.
• Lead the creation of a charter for the Registry’s Advisory Board, including structure, scope, and governance guidelines.

Other Job Functions

• Assist the Registry President and Director in identifying ways for partners to utilize the Registry infrastructure.
• Contribute to ongoing quality improvement initiatives, maintain accurate documentation, and support compliance with regulatory and ethical standards
• Oversee development and implementation of new tools in the Registry platform for approved partner projects.
• Work with external platform vendor to define, document, and manage functional requirements of the Registry platform.
• Participate in product planning meetings, test new features, and ensure platform aligns with research and user needs.
• Establish regular feedback loops with internal and external stakeholders to validate functionality and capture evolving needs.
• Monitor projects’ progress to ensure the schedules, milestones and overall goals are met.
• Conduct regular project reviews and facilitate decision-making with stakeholders to ensure clear and transparent communication about project risks/issues.
• In collaboration with project partners and Registry staff, address any issues with the platform or project plans promptly.
• In collaboration with the Registry staff, develop strategies to maximize diversity, equity, and inclusion of research participation and implement processes to improve participant engagement across designated projects.
• Collaborate with the Registry President and Director to develop budgets and plans for new programs and initiatives.
• In collaboration with Registry staff, evaluate and address the programs’ risks, strengths and weaknesses.
• Identify and use appropriate metrics and KPIs to effectively track project/program success.
• Produce complete, accurate, and timely reporting of program and project statuses throughout their life cycles.
• Ability to travel as needed to attend educational meetings, conferences, and team functions.

SUPERVISORY RESPONSIBILITIES

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

Education

• A bachelor’s degree is required. Master’s degree, or PhD desired with post-degree clinical/research experience.

Licensure/Credentials

• Project Management Professional (PMP) or equivalent certification or certification eligible desirable.

Experience

• Minimum of 3 years’ experience in project management.
• 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.
• Experience in an applicable field such as patient registries, survey and/or remote data collection and/or neurogenerative diseases preferred.
• Experience with online project management applications (Monday.com, Smartsheet, MS Project, Teams Planner) desirable.

Special Knowledge/Skills

• Exceptional skills in communication and collaboration.
• Strong written and oral communication skills.
• Ability to take initiative to complete project deliverables and work independently towards overall project goals.
• Demonstrated ability to collaborate on multiple concurrent projects with dynamically changing priorities.
• Proficiency in Microsoft® Office Suite, as well as use/learn new web-based applications.
• Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and Zoom/Zoom Webinar desirable.

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 depending on position

AFTD Awards

• Platinum Seal of Transparency for 2025 from 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
• Employer paid Basic Life Insurance/AD&D
• Employer 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
• 14 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
• Hybrid working environment, with the opportunity to work remotely up to 3 days per week
• 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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