Registry Program Manager


FSHD Society




$70,000 to $85,000

/ Yearly


Jun 10, 2024

About the FSHD Society

The FSHD Society is a leading non-profit organization dedicated to accelerating the development of treatments and, ultimately, a cure for facioscapulohumeral muscular dystrophy (FSHD). Our mission is to serve as the hub for the FSHD community by fostering collaboration, empowering individuals and families affected by the disease, and driving innovative research. Through our global advocacy, education, and research initiatives, we strive to improve the lives of those impacted by FSHD while working towards a future free from its constraints. Over the last three decades, the work of the FSHD Society has accelerated major advancements in the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

Job Overview

The Registry Program Manager is responsible for the day-to-day operational management of the FSHD Society’s new, ground-breaking patient health platform and research registry, BetterLife FSHD. The Registry Program Manager’s key responsibilities include oversight of user experience and communications, data management and quality control, providing support for participants, and program and project management. The ideal candidate enjoys working with data and has excellent attention to detail, but also craves variety in their tasks and enjoys interacting with patients and families. The Registry Program Manager will have the exciting and unique opportunity to work on the front lines of new technologies and approaches to patient-centered, real-world data

The Registry Program Manager reports to and works closely with the Director of Clinical Research. They thrive in a multi-disciplinary and collaborative environment, interfacing with marketing, patient education and engagement, research, business development, and administrative team members. The Registry Program Manager also provides prompt and professional communication with external stakeholders, including other patient advocacy organizations, researchers, and biopharmaceutical companies.

Key Responsibilities

1) Oversight of user experience

  • Creates and manages user communication and notification schedules, working with the marketing team to create and refine messaging
  • Enters details for new clinical trials and research opportunities and defines matching criteria for user notifications
  • Manages community research polling feature, including compiling and reviewing user-submitted polling questions
  • Regularly solicits and documents user feedback and suggestions for continued improvement of the platform, including running patient focus groups for a deeper understanding of user needs
  • Contributes to the development of user training materials, for example, videos or FAQs
  • Actively participates in regular meetings with a business partner that provides registry infrastructure and consortium that advises on strategic direction and development
  • Identifies opportunities for and supports process improvement and optimization

2) Data management

  • Performs regular review of user accounts and participant data and identifies and resolves issues
  • Reviews, abstracts, and enters data for participant-provided genetic test results
  • Creates and manages data exports for research projects and fulfills data requests
  • Compiles regular registry reports and key metrics
  • Performs basic analyses and interpretation of qualitative and quantitative data
  • Protects the confidentiality of patient data, releasing information only to authorized persons and in accordance with HIPAA and human subject protection policies and procedures

3) Supporting participants

  • Maintains thorough knowledge of research protocol and registry workflows
  • Meets and communicates with patients and families who have questions about the platform
  • Assists patients and families as needed through online informed consent process
  • Tracks and communicates with patients and parents of patients who are turning 18 and who must re-consent to continue participating in the registry

4) Program management

  • Contributes to the composing and amending of consent forms, protocols, recruitment materials, and other documents for IRB review
  • Leads the development of standard operating procedures, work instructions, and training for registry users and internal staff
  • Manages data request process for external researchers and steering committee approval workflows
  • Manages the setup and implementation of new research projects using the registry platform, including working with clients to define project parameters and working with the business partner to implement
  • Manages and leads work commitments and timelines related to the registry in collaborative projects with external partners, including representing the FSHD Society at external project meetings

This description is a summary only and describes the general level of work being performed, it is not intended to be all-inclusive. The duties of this position may change from time to time and/or based on business needs. We reserve the right to add or delete duties and responsibilities at the discretion of the supervisor and/or hiring authority.

Experience and Qualifications

  • Excellent communication skills, both oral and written
  • Proficiency in MS Office, including Word, Excel, and PowerPoint
  • Strong interpersonal interaction and communication skills
  • Strong project management skills
  • Ability to initiate, organize, and manage time with the ability to prioritize tasks
  • Superb attention to detail
  • Ability to demonstrate respect, kindness, and professionalism toward patients and families, their rights, and individual needs
  • Knowledge and experience with human subject protections and good clinical practice preferred
  • Knowledge of database systems and management, ideally with clinical and/or research data, preferred


  • BS/BA Degree or Equivalent

Language Skills

  • Ability to write reports and business correspondence
  • Ability to effectively present information and respond to questions

Physical and Practical Demands

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform essential functions.

  • Must be able to see and read fine print. Employee will have close visual contact with a computer monitor constantly.
  • Must be able to communicate utilizing a telephone.
  • Mobility to allow access to all parts of the office.
  • Must be willing and able to learn all necessary computer functions.
  • While performing the duties of this job, the employee is regularly required to lift boxes weighing at least 20 lbs., will sit for long periods of time, and may use repetitive wrist and hand motions involved in sorting and handling documents. The employee is regularly required to reach, with hands and arms. 

The FSHD Society is an equal opportunity employer, which welcomes qualified applicants of all races, ethnicities, genders, and sexual orientations.

How to Apply

Please send the following: (a) a one-page cover letter, (b) a resumé, and (c) the names and telephone numbers of three references by e-mail to: careers@fshdsociety.org with the job title in the subject line. No phone calls, please.

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