FOP Registry Project Manager

Job overview:

The FOP Registry Project Manager will manage a global registry on behalf of the IFOPA Research Community. The mission of the FOP Registry is to secure the improvement of patient outcomes by developing the most robust, complete and global dataset on FOP, accelerating the development, approval and access to new therapies.

Key components of global registry project management encompass: data collection and management, strategic registry planning, executing on registry enhancements, site management, advisory board coordination and execution, reporting and scientific publications. Key external stakeholders include medical advisor board members, patient advisory board members, and IFOPA’s third party registry vendors.     

This is a part-time position and the Registry Project Manager can work remotely from anywhere in the country.   The project manager will report to the Director of Research Development & Partnerships.

To Apply:

Send your resume along with a cover letter and salary requirements to Michelle Davis, Executive Director, at

Job responsibilities:

  • Develop an integrated global Annual Registry Plan, with Medical Advisory Board and the Direct of Research
  • Coordinate and execute of all deliverables on Registry Plan, including all medical and scientific publications
  • Coordinate with the third party vendor to implement new enhancement (e.g. mobile app) to the Registry
  • Coordinate Medical and Patient Advisory Boards as needed; manage the execution of Advisory Board Meetings
  • Manage the development and rollout of the medical portal, including soliciting input from medical advisors as needed
  • Work with biostatisticians and Direct of Research on data requests and the development and distribution of Registry reports
  • Collaborate with the Registry Executive Committee to align on key priorities and strategies
  • Present at patient meetings to communicate the value and importance of the FOP Registry
  • Ensure full compliance with all organizational and industry policies  

Basic qualifications:

  • Bachelor’s degree in relevant discipline
  • At least 3 years project management experience, preferably including registries or observational studies
  • At least 3 years of experience in the biotechnology, pharmaceutical or medical device industry
  • Experience working at or with registry or clinical trial sites
  • Track record of building strong working relationships with medical advisors
  • Hard-working, energetic and passionate about making a difference for patients
  • Outstanding interpersonal skills, including building strong working relationships, and managing and resolving conflict
  • Superb communication skills; oral and written, including presentation skills
  • Ability to work independently
  • Some domestic and international travel will be required (~10%)

Preferred qualifications:

  • Medical or scientific degree and/or professional credentials
  • At least 3 years project management experience, including registries or observational studies
  • Experience in developing, conducting and publishing peer-reviewed scientific or clinical research
  • Knowledge or experience in epidemiology, clinical research, drug development or health policy
  • Experience with industry technology, including Electronic Data Capture systems, and web-based communication and community tools


The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is an international nonprofit organization fostering medical research and providing education and support for those afflicted by the rare genetic condition fibrodysplasia ossificans progressiva (FOP). The IFOPA’s mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations, leading clinicians, scientists and drug developers. 

The IFOPA is an equal employment opportunity employer and strives to comply with all applicable laws prohibiting discrimination based on race, color, creed, sex, age, national origin or ancestry, physical or mental disability, veteran status, marital status, etc., as well as any other category protected by federal, state, or local laws. 

The job profile in no way states or implied that these are the only duties to be performed by the jobholder. Essential elements may change when necessary.

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