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FTD Disorders Registry Director

Job Details

Legal Address - King of Prussia, PA
Fully Remote
Full Time


Organization description

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 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 Registry Director is responsible for the scientific leadership and overall management of the FTD Disorders Registry. This role requires both strategic thinking and strong implementation skills and is critical to the successful execution and management of the Registrys mission and initiatives. This remote-based position will preferably be located near King of Prussia, PA and will report to the Registry President


Essential Job Functions

Participant recruitment, engagement, and empowerment

  • Oversee the process of remote enrollment, participation, and engagement in the Registry.
  • Along with the Registry Manager, represent the Registry to communities of prospective participants and healthcare providers at conferences, webinars, and other opportunities.
  • In partnership with the Registry Manager and other staff, develop and oversee strategies to maximize the diversity, equity, and inclusion of research participation, including earning trust, empowering community champions, and partnering with other organizations.
  • In partnership with the Communications Manager and other staff, develop educational content and strategies to empower people to make informed decisions about participation in Registry and non-Registry FTD research.
  • Ensure continued protection of participant privacy and compliance with research & privacy regulations by monitoring best practices and updating policies and procedures as needed, with staff or contract support if needed.

Research and Research Partnerships

  • Develop research projects independently and with external partners, reviewing availability of fit-for-purpose data, designing or selecting data collection instruments when needed, implementing collection, analyzing, and presenting at scientific conferences, co- authoring papers for publication.
  • Work with IT platform vendor to ensure that data can be efficiently and appropriately shared with external researchers while protecting against participant reidentification.
  • Actively cultivate collaborations and external researcher requests for data collection.
  • Responsible for the Registry IRB protocol as PI of record; submit study modification applications and continuing reviews with FTDDR staff support.
  • Maximize utility of the Registry as a resource to empower people to make informed decisions about participation in external research studies.
  • Manage requests for research study referral support from industry, academic, and non-profit partners: communicating Registry capabilities, evaluating referral requests, overseeing study referral services via a portfolio of communication channels, and tracking success metrics.
  • Direct the Registrys support of external research partnerships and supervise the partnership Program Manager(s)
  • Support the Registry President to cultivate and negotiate new Registry partnerships.

Operations and Management

  • Provides leadership and strategic direction to registry staff, including hiring, training, day-to-day management/oversight, performance management and professional development opportunities.
  • Develop annual budget in partnership with FTDDR President and Chief Finance Officer.
  • Manage FTDDR finances within the constraints of the approved budget.
  • Oversee the IT Systems Administrator and the external platform provider to ensure integrity of the Registry website, web portal, and integrated applications inclusive of licenses, privacy/confidentiality/regulatory assurances.
  • Document business continuity processes to mitigate organizational risk.
  • Reinforce a robust, supportive, and collaborative team culture.

Strategy and Sustainability

  • Support the Registry President in strategic planning and lead development of tactics to address strategic plan objectives Monitor progress toward strategic plan objectives and instill data-driven decision-making to continually improve upon Registry activities.
  • Support the President in engaging with an active Scientific Advisory Board and other stakeholders across biopharma, government, academic, and advocacy organizations.
  • Connect with other rare and/or neurodegenerative disease registry peers to learn and monitor developments and opportunities that may advance the Registry.
  • Grantsmanship: Identify opportunities for grant funding; create project plans and write grant proposals; manage active grants to ensure compliance with federal and grantor guidelines and to maximize productivity, revenue, and value.
  • Partner with the President to identify opportunities to diversify revenue and enable long-term sustainability.

Other Job Functions:

  • In addition to the above, the Registry Director will also lead transition to a new registry platform with a industry leader in registry platforms, being built now for launch in fall 2023 with revised protocols, data collection and management capabilities, and interfaces for participant, researchers, and admin.


  • This position has supervisory responsibilities for the following roles:
    • Registry Manager
    • Communications Manager
    • ALLFTD Project Manager
    • IT System Administrator



Knowledge, skills, and abilities required for this role:


  • Advanced scientific or medical degree with a minimum of 5 years experience leading clinical research studies.


  • Minimum of 5 years experience performing data management and clinical research
  • Minimum of 5 years experience managing staff
  • Experience in an applicable scientific field such as patient registries, survey and/or remote data collection, engaging and empowering underserved populations, and/or health outcomes research for neurodegenerative diseases.

Special Knowledge/Skills

  • Passion for empowering people with lived experience as key partners in research.
  • Exceptional skills in communication and collaboration.
  • Exceptional scientific skills in planning, analyzing, and publishing survey-based research.
  • Demonstrated ability to collaborate on multiple concurrent projects with dynamically changing priorities.
  • Ability to travel ~20% time.


  • The Registry Director will work full-time for the Registry. For employment purposes, all Registry staff are hired as employees of AFTD, an affiliated non-profit that co-founded and manages the Registry.


Interview Process

  • Submit a cover letter and resume.
  • Phone screen with a member of AFTDs 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.

Awards & Accolades

  • Platinum Transparency 2023 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
  • Identify Protection
  • Voluntary Term Life/AD&D
  • Pet Insurance
  • Employee Assistance Program
  • SIMPLE IRA with company match
  • Generous paid vacation and sick time
  • 10 paid holidays
  • 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

The Association for Frontotemporal Degeneration requires all new employees to present proof they are fully vaccinated against COVID-19 when they start work. Currently, fully vaccinated is defined as someone that has received both doses of the Pfizer/Moderna COVID-19 vaccines or one dose of the Johnson & Johnson COVID-19 vaccine 14 days or more before they begin work. Individuals with a disability or a religious reason preventing them from taking the vaccine may request an accommodation.

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.