Registry Coordinator

Position: Registry Coordinator

Reporting to:Registry & Research Program Manager

Salary:$34,000 per annum

Contract:Full Time, 9AM – 5PM EST

Location: Remote (US based)

Revised:January 2024

Organization Overview

The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.

Overview of Responsibilities

The Registry Coordinator will play a crucial role in our dynamic team, providing comprehensive administrative assistance across research and access programs. Responsibilities include managing meeting invites, attendance records, and shared inboxes, as well as coordinating applications from external parties. In addition to administrative responsibilities, this role also involves direct support for study-specific research tasks, including data entry, data preparation, and participant support. The ideal candidate should possess strong organizational skills, data management proficiency, and the ability to adapt to changing priorities.

Key Responsibilities/Essential Functions

This role has three (3) core areas of ownership, the responsibilities involved include, but are not limited to:

Registry Administration

• Coordinate data applications from external parties, and continuously update relevant Monday.com boards to ensure the process lifecycle is up to date.
• Assist the Registry & Research Program Manager to prepare reports using REDCap and maintain relevant Monday.com dashboards.
• Execute data entry tasks for the Registry.
• Ensure timely completion of ongoing data management and data preparation tasks as assigned by Program Manager
• Provide direct support to Registry participants through management of the project Inbox

Centers & Networks of Excellence (CNE) Support

• Assist with administrative and program-specific tasks as assigned by the Program Manager
• Facilitate dissemination of program materials to CNE members.
• Coordinate timely maintenance of Monday.com dashboards.
• Assist with management of application materials and redesignation administration.

Department Administration

• Provide administrative support to the research team, such as coordinating meetings, materials, taking minutes and drafting and distributing agendas and actions.
• Undertake daily administrative tasks to ensure coordination of the research team’s activities, ensuring use of relevant governance frameworks.
• Contribute to the Research Department's commitment to all areas of work carried out within the research department maintaining GDPR and HIPAA compliance.

• Provide day-to-day management of shared Society Research department mailboxes, escalating issues to team leads as needed.
• Ensure accurate and timely records are maintained within Monday.com. Maintaining detailed, up-to-date records.

Work Environment

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some weekend work.

Requirements

• Proven administrative experience in a cross-functional environment, preferably within medical/research and/or a nonprofit environment.
• Experience with REDCap.
• Experience with handling confidential information.
• Attention to detail and the ability to check your own work for accuracy.
• Working knowledge of GDPR and HIPAA would be beneficial, training will be provided.
• Excellent communication skills, with the ability to converse across a range of stakeholders.
• Able to manage time effectively, including managing competing demands, prioritizing tasks, adapting flexibly to changes and meeting all deadlines.
• Be a collaborative team player with excellent interpersonal/communication skills.
• The ability to work in a virtual team setting and work independently.
• Ability to work flexible hours to facilitate meetings across time zones and to prepare for in-person Society events.
• Must be eligible to work in the US/UK without sponsorship. 

• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint).
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.
• Travel to and attend our two in-person staff retreats (1 UK & 1 US based).
• Travel to and attend our in-person annual Global Learning Conference, and other events as required from time to time.

Preferred Skills:

• An interest in EDS / HSD or rare diseases in general would be beneficial.
• Experience In a research and/or healthcare setting
• In addition to English, an intermediate or higher proficiency in another language

Diversity Statement 

The Ehlers-Danlos Society’s commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. - providing care, access, research and education in all that we do. We are a global, multicultural organization, as such we seek to increase opportunities for individuals from diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates, and promotes opportunities regardless of race, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.

Job Type: Full-time

Pay: $34,000.00 per year

Benefits:

• 401(k)
• Employee assistance program
• Paid time off

Schedule:

• Monday to Friday

Application Question(s):

• To be considered for this role, please apply directly using The Society's application form here - https://wkf.ms/3SuhNku

Work Location: Remote