Since 2017, the FTD Disorders Registry has provided a secure, centralized platform for persons diagnosed, caregivers, and families to connect to research participation opportunities and share their day-today experiences of living with FTD. Each story advances the research of FTD to hasten treatment development.

The Registry now presents its first formal Strategic Plan, designed to expand its reach and continue providing value for participants and researchers. Four strategic pillars and goals inform the plan: Infrastructure, growth, partnering and collaboration, and sustainability.

“This is an important moment for the Registry,” said AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD. “The Strategic Plan, developed in collaboration with our partners, allows us to evolve from a startup into a long-term sustainable organization with a worldwide reach.”

“The first pillar of the Strategic Plan involves creating a more robust infrastructure that includes genetic data,” said Registry Director Dianna Wheaton, MS, PhD, CHES.

Dr. Dacks, who also serves as president of the Registry, added, “We’re already HIPAA-compliant, but a technology upgrade is needed for the Registry to better reach international communities.”

“We need to cultivate, engage and retain new diagnosed persons and caregivers,” Dr. Wheaton said, referring to the second pillar – growth. “By the end of 2022, we want to double Registry enrollment, with a major outreach to underserved communities in the U.S. and across Asia and Africa.”

Pillar number three is an ambitious effort to enhance partnerships and collaborations, establishing the Registry as the global go-to resource for FTD researchers. “And achieving sustainability through long-term business planning is the final pillar for expanding revenue streams and partnerships and ensuring longevity,” Dr. Dacks said.

The Registry has recruited more than 4,200 participants, providing them with information on research studies and clinical trials. But the Registry’s “most significant accomplishment,” Dr. Wheaton said, “is a collaboration with the ALLFTD Research Consortium. Together we built a custom portal on the Registry website where patients now enroll in the five-year ALLFTD study.”

“Every success brings us one step closer to conquering FTD. We honor the courage of our community as they work with us towards a cure,” Dr. Dacks said.

Dr. Wheaton encourages anyone diagnosed with FTD, their current or former family members, caregivers, and friends to register and help contribute to the science of FTD.