From Hope to Action:

goal1

Goal 1: Advance diagnostics, therapeutics, and a cure for all.

Priority: Diagnosis and Treatment

Far too often, receiving a correct diagnosis of FTD is a frustrating, multi-year process rife with false leads and false hope. On average, it still takes 3.6 years to get an accurate diagnosis. Compounding this challenge, there are currently no approved disease-modifying therapeutics for FTD.

Objective 1.1: Foster a diverse, global community of FTD-focused scientific investigators with a 10% annual increase in the points of contact with investigators.

Strategies

  • 1.1.1. Fund researchers to recruit and retain talent in FTD research.
  • 1.1.2 Foster environments for collaboration, training, and networking for FTD researchers.
  • 1.1.3 Encourage dialog across relevant disciplines and stakeholders.

Objective 1.2: Expand, inform, and empower a research-ready community through 5 new or strengthened initiatives annually.

Strategies

  • 1.2.1 Strengthen and expand the FTD Disorders Registry as a resource to engage and educate the community.
  • 1.2.2 Enable and empower the community to make informed decisions about participation in research.
  • 1.2.3 Continue to learn and document the diverse experiences and perspectives of the FTD community and its underserved populations to inform research design.
  • 1.2.4 Advocate for research approaches that reflect the needs and values of the FTD community.
  • 1.2.5 Inform regulatory bodies of the needs and values of the FTD community

Objective 1.3: Develop or strengthen 5 tools and resources needed for FTD research to succeed.

Strategies

  • 1.3.1 Strengthen and expand the FTD Disorders Registry as a key partner for FTD research.
  • 1.3.2 Promote responsible, equitable, enduring access to quality data, research tools and resources.
  • 1.3.3 Support development of biomarkers and clinical outcome measures for use in FTD care and research.
  • 1.3.4 Foster consensus around best practices across U.S. and international research.

Objective 1.4: Accelerate and broaden research approaches to address unmet needs in FTD research, with 10 approaches invested in by June 2025.

Strategies

  • 1.4.1 Partner to leverage expertise and resources from related fields.
  • 1.4.2 Accelerate progress by investment in emergent and existing research programs.
  • 1.4.3 Support novel strategies and underutilized approaches for FTD research.

Objective 1.5: Increase the number of physicians who recognize FTD as a neurodegenerative disease and who refer to a neurology specialist.

Strategies

  • 1.5.1 Develop criteria and recognition for clinical sites that provide accurate FTD diagnosis or referral to appropriate FTD centers (e.g., FTD Centers of Excellence designation).
  • 1.5.2 Develop partnerships with professional organizations, academic institutions, CME/CEU providers and others to deliver FTD information and education.
  • 1.5.3 Develop targeted resources & tools to address the unmet educational needs of multiple healthcare disciplines (physicians, nurses, long-term care staff, social workers).

Strategic Plan Highlights:  Overview  |   Vision, Mission, Values  |  Strategic Themes  |  Four Goals  |  Your Support Makes This Work Possible

Download the full AFTD Strategic Plan 2022-2025 here.