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The Association for Frontotemporal Degeneration (AFTD) · 5 hours ago

FTD Disorders Registry Program Manager - ALLFTD Liaison (48478)

Legal Address - King of Prussia, PA 19406

Full-time

Hybrid

Mid Level

3+ years exp

The Association for Frontotemporal Degeneration (AFTD) is dedicated to ending frontotemporal degeneration (FTD) and is seeking a Program Manager for the ALLFTD study. This role involves overseeing registry-based support, managing participant enrollment, and ensuring effective communication and collaboration among stakeholders.

EducationHealth CareHospitalMedical

Comp. & Benefits

Responsibilities

Assist the Registry Director in identifying potential program partners and assessing their fitness to the Registry’s goals and objectives

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

Implement project plans, assess project risks, and report progress to stakeholders

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

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

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

Qualification

Data CollectionStakeholder EngagementProject ManagementRemote Clinical ResearchMicrosoft Office SuiteSurvey SoftwareCommunication SkillsCRM SoftwareCollaborationInitiativeAdaptability

Required

A bachelor's degree is required

Minimum of 3 years' experience in project management

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

Preferred

Master's degree, or PhD desired with post-degree clinical/research experience

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

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

Exceptional skills in communication and collaboration

Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and Zoom/Zoom Webinar desirable

Benefits

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