The FTD Disorders Registry (FTDDR), co-founded in 2015 by AFTD and The Bluefield Project for the Cure, is a non-profit entity with the mission to curate a patient registry to facilitate and advance research for the entire spectrum of FTD disorders. The Registry Manager will provide operations and administrative support. This position will be based in Dallas/Fort Worth and work under the guidance of the Registry Director. The successful candidate will be a goal-oriented, self-starter who is comfortable working with patients, caregivers, and clinical researchers.
The Registry Manager will be responsible for the hands-on registry administration including online patient enrollment, account validation, and information requests. S/he will assist with all facets of verbal and written communications including crafting materials for varied media channels targeted to segments of our audience, as well as assisting to develop and maintain content for the FTDDR website (www.ftdregistry.org). Additional duties include assisting with online survey administration, preparing materials for Institutional Review Board (IRB) submission, tabulating summary statistics, and creating visual representations (charts, graphs) of basic demographics and research data.
Assist families to join the FTDDR; answer questions; guide online registration.
Error check data in the online database; verify/update participant information.
Maintain online survey tool administration/data collection; assist with survey development and implementation.
Assist with IRB submissions, basic data analysis, and presentation preparation.
Create e-Blast email notices for study announcements, updates, ‘press releases’, etc.
Create content and visual layout for FTDDR quarterly e-Newsletter.
Assist with overall content development for social media and FTDDR website.
Maintain and update the FTD study/clinical trial notices and all Registry web links.
Establish a content development and timetable plan for FTDDR communications.
MS strongly preferred (BS considered with post-degree clinical/research experience).
Strong written and oral communication skills.
Experience communicating scientific and technical information to a lay audience.
Proficiency in Microsoft® Office Suite, as well as use/learn new web-based applications.
Experience managing active social media presence (Facebook, Twitter, LinkedIn, etc).
Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), CMS software (Drupal), and any visual design software is highly desirable.
Experience as a research assistant, study coordinator, or healthcare-related staff/volunteer is a plus.
Additional Salary Information: The Registry Manager is a full-time position with benefits. Salary commensurate with experience. Please email resume with cover letter, a brief writing sample and salary requirements to: email@example.com and reference “Registry Manager” in the email subject line. AFTD is an equal opportunity employer. No phone calls.
About The Association for Frontotemporal Degeneration
AFTD is a nonprofit national advocacy organization that represents the interests of persons diagnosed with FTD, their family, caregivers, and the researchers and clinicians who work with this rare form of dementia.