Job details
Job type full-time
Full job description
Company description
The ftd disorders registry is a powerful tool in the movement to create therapies to improve quality of life and cure frontotemporal degeneration (ftd), a group of rare adult-onset diseases that affect a person’s behavior and ability to move or speakTogether, the ftd disorders are the most common cause of dementia in people under the age of 60The ftd disorders registry (ftddr), llc was founded in 2015 as a 501(c)3 nonprofit entity with the mission to facilitate research into the spectrum of ftd disorders and to accelerate the development of treatments by providing resources to promote informed participation in research and amplify the voice of patients’ and families’ lived experienceJoin our team and together we can help change the course of these diseases and put an end to ftd.
Job description
Ftddr seeks a registry manager to provide hands-on management of key functions of our growing organization, such as recruiting and retaining participants, validating accounts, building online surveys, and creating summaries or visual representations of registry dataCandidates with a research background will have opportunity to participate in survey-based research, analysis, and external collaborationsThe successful candidate will be a resourceful, goal-oriented, self-starter who is comfortable working with fellow non-profit professionals as well as clinical researchers and people affected first-hand by ftd.
The registry manager position offers the opportunity to thrive on a cross-functional team where you can maximize your professional impactThe candidate for this remote-based position will work closely with the registry director.
Key responsibilities:
Manage all aspects of online participant enrollment: answer questions, guide online registration, troubleshoot errors, and account access issues.
Verify and manage participant data, monitoring for errors, updating information, and trouble-shooting procedures to reduce frequency of errors.
Support online survey data collection: assist with survey development, implementation, and reporting.
Participate in basic data analysis and presentation preparation.
Represent the registry via attendance or presentation at meetings and conferences, particularly to recruit and engage with families affected by ftd.
Assist with irb submissions, such as study modification applications and continuing reviews inclusive of annual enrollment/dropout tracking.
Maintain and update the ftd study/clinical trial notices, interfacing with external clinical research partners.
Collaborate with the registry director to co-manage external data/project requests and related online management tools.
Provide project management for key registry initiatives.
Provide general administrative assistance such as, triage information requests via phone/email, track internal license renewals, assist with new vendor selection, and assorted operations tasks.
Collaborate with the communications manager and registry director to co-develop engagement strategies to promote participant enrollment and retention.
Collaborate with the communications manager as needed for content development for communication channels.
Assist the director with varied interactions with the ftddr llc management and scientific advisory boards.
Qualifications
Ms strongly preferred (bs considered with clinical/research experience).
5-7 years of related experience required; background as a research assistant, study coordinator, healthcare-related staff/volunteer is highly desirable.
Proficiency in microsoft® office suite, as well as use/learn new web-based applications.
Familiarity with database/crm software (salesforce), survey software (surveygizmo), and project management applications highly desirable.
Strong written and oral communication skills.
Experience engaging and communicating with individuals or families affected by a disease is a plus.
Additional information
The registry manager is a remote-based, full-time employee with benefits.
While the director of the ftd disorders registry is based in the dallas/fort worth tx area, this position is open broadly to individuals residing in the united states with existing work authorization.
Contact
Please submit your resume with a cover letterApplications without a cover letter will not be consideredThe ftd disorders registry, llc is an equal opportunity employerNo phone calls.
Ftddr is committed to creating a diverse environment and is proud to be an equal opportunity employerAll qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status.
All of your information will be kept confidential according to eeo (equal employment opportunity) guidelines.
