Position: PATH for PWS Study Coordinator 
Employer: Foundation for Prader-Willi Research 
Classification:  Professional, full-time, remote 


Position Overview: 

The PATH for PWS Study Coordinator is a unique opportunity for a highly motivated professional to accelerate research into the natural history of Prader-Willi syndrome (PWS), a rare neurodevelopmental disorder, and lay the groundwork for understanding the impact of novel therapies for the PWS community. The PATH for PWS Study coordinator will join a dedicated team at the Foundation for Prader-Willi Research (FPWR), a nonprofit whose mission is to eliminate the challenges of PWS through the advancement of research and therapeutic development.  


Specific tasks: 

The PATH for PWS study coordinator will: 

  • Serve as primary study liaison with families interested in joining a natural history study within the Global PWS Registry; answering basic questions about the project, guiding patients and families through the online registration and study surveys, reporting any problems or recurring questions, and coordinating a laboratory-based substudy. The coordinator will engage and encourage enrolled participants to complete their surveys. 
  • Coordinate with FPWR staff, Sponsor staff and other stakeholders to develop outreach plans and materials, and implement recruitment strategies in accordance with IRB requirements and approvals, to recruit new families to the study 
  • Conduct or participate in the informed consent process including answering any questions that study participants have related to the study, and working with the IRB. Appropriately document consent. 
  • Assist Sponsor staff in developing a clinical narrative associated with serious medical events that may occur during the course of the study.  Work with participants to ensure associated medical records uploaded into the database are accurate and complete. 
  • Ensure data quality within the Global PWS Registry 
  • At regular intervals, develop deidentified dataset downloads, evaluate quality, and transfer data to Sponsor. 
  • Track and manage study timelines 
  • Maintain effective and ongoing communication with FPWR staff, Sponsor staff, and research participants during the course of the study. 
  • At regular intervals, provide metrics reports including participant enrollment, survey completion and follow-up with participant families as needed on incomplete surveys or data clarifications. 
  • Work with the Director of Research Programs to manage the day to day activities of the study including problem solving, communication and financial management. 
  • Disseminate study findings to study participants and stakeholders by presenting information in an easy to comprehend manner. 
  • Knowledgeably and professionally represent the research interests of FPWR and the PATH for PWS study in meetings with researchers, clinicians, pharmaceutical companies, advisers, patient advocacy groups and related stakeholders.  
  • Adhere to and support all Federal regulations instituted to safeguard protected health information (PHI), and support the ethical conduct of research. 
  • Complete the appropriate level of training regarding the access, use, and disclosure of PHI in accordance with Federal regulations. Assist the PI to assure that all personnel associated with the project complete appropriate training. 


Qualifications of an Ideal Candidate: 

Key qualities include project management experience, ability to interact warmly and professionally with families, strong organizational and database skills, demonstrated written and oral communication skills, and an innate sense of pace and urgency. Equally important is the ability to work productively and proactively, both independently and within a team environment. 

  • Bachelor’s degree or higher with 5+ years of experience in clinical research, biological sciences, medical education or other healthcare sectors.  
  • HIPPA trained 
  • Project management skills – must be VERY organized and capable of managing multiple moving parts to ensure timely delivery of projects 
  • Strong interpersonal skills; ability to manage external stakeholders, experience working with families 
  • Strong Excel skills and experience in data management 
  • Flexibility in approach and willingness to adapt when necessary 
  • Excellent verbal and written communication skills 
  • Ability to work collaboratively 
  • Rare disease experience is highly desirable 


About FPWR: 

The Foundation for Prader-Willi Research (FPWR) was founded in 2003 to eliminate the challenges of PWS through the advancement of research and therapeutic development.  Our supported research spans the continuum of basic science to clinical trials, and we strive to enable active collaboration across all stakeholders (patients and their families, clinicians, scientists, companies, regulators) in the pursuit of therapeutics.  Our scientific reach extends into many high profile areas of research, including epigenetics, obesity, and autism. We are an innovative and passionate patient advocacy organization with a sharp focus on advancing research and treatments for PWS.    

Since its inception, FPWR has rapidly grown into the largest nonprofit supporter of Prader-Willi research worldwide.  The Foundation is committed to advance therapeutic development for PWS.  To that end, FPWR has developed a Global PWS Registry and has engaged multiple stakeholders in a PWS Clinical Trials Consortium to advance clinical trials in PWS.   


Additional Details 

This is a virtual position requiring work from a home office. 
Travel will be required. 
Benefits: Paid vacation, health and holidays, health insurance, employee-contributed 401k plan 
Salary: competitive salary, commensurate with experience.  


How to Apply 
Interested candidates should send a resume and thoughtful cover letter describing their specific qualifications and interest in the position to info@fpwr.org Please include expected salary range. Submissions without a cover letter will not be considered.  Please, no telephone inquiries.  Applicants who best match the position needs will be contacted.