PRESS & NEWS
Amplifying Your Voice in FTD Research Webinar on March 28, 2022
Perspectives in FTD Research Webinar Series
Perspectives in FTD Research Webinar Series
A webinar about why certain information is gathered and how that data is used by researchers will be presented on Monday, March 28, 2022, at 1:00 p.m. Eastern Daylight Time (10:00 a.m. Pacific).
Co-hosted by The Association for Frontotemporal Degeneration and the FTD Disorders Registry, the webinar Amplifying Your Voice in FTD Research: Why Am I Asked So Many Questions? will feature experts who will empower you with information to make an informed decision about taking part in research.
When studying frontotemporal degeneration (FTD), researchers ask a lot of questions. Research participants may find themselves thinking, “Why do you need to know all this information?” Some people are hesitant to participate in research, and privacy is often a concern.
This webinar will include information about how identity is protected in research. It will show how information gathered through the EL-PFDD meeting and the FTD Insights Survey are used to advance science. Additionally, you will be given resources for finding research studies.
During this hour, you can expect to:
- Understand how participating in research leads to advancements in understanding and treating FTD.
- Recognize how privacy and personal information are protected in research.
- Identify resources on ways to participate in FTD research
Watch the replay below:
Shana Dodge, Ph.D., MA, AFTD's Director of Research Engagement, will explain the sequence of developing treatments for FTD and how your voice plays a role. She will show how participating in FTD research leads to advancements in understanding and treating FTD.
Lakecia L. Vincent, MPH, MCHES, the FTD Disorders Registry Manager, will discuss data use and explain how your privacy is protected.
PRESENTERS
Dr. Dodge joined AFTD in May 2021. A licensed clinical psychologist, she holds a Ph.D. in Clinical Psychology from the University of Hawaii, an MA in Psychology from the New School, and a BA in Psychology from George Washington University. She has research and clinical experience in cognitive therapy and remediation, early detection of psychiatric conditions, and serious mental illness. Previously, she worked for SAIC, a contractor for the Department of Defense, supporting program evaluation and change management of more than 200 military health programs.
Vincent joined the FTD Disorders Registry in January 2020. She received a Master of Public Health from Walden University and a Masters Certified Health Education Specialist from the National Commission for Health Education Credentialing. She is a dedicated public health professional with 10 years of experience in program design, implementation, health promotion and education. Her experiences have focused on intersecting public health education and clinical research to enhance and impact individuals across the continuum of health. Prior to joining the Registry staff, she developed clinical education programs to drive engagement and encourage populations to better manage their health.
This webinar is the third in the Perspectives in FTD Research Webinar Series, hosted jointly by AFTD and the Registry, designed to help FTD-diagnosed persons, care partners, family members, and persons at risk for developing FTD become informed FTD research participants.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.