Registry Operations Director


Muscular Dystrophy Association


Boston, Massachusetts, Washington, D.C.


Registry Operations Director, Boston:

Registry Operations Director, Washington, D.C.:


The registry operations director will direct and manage operations for MDA’s large, multi-disease Neuromuscular Observational Research (MOVR) Data Hub, a key element of MDA’s mission to improve patient outcomes and help drive drug development. This position works across multiple departments within MDA and with external stakeholders including, but not limited to, industry, governmental agencies, academic institutions and other non-profit organizations to build and maintain the MOVR Data Hub.  This position will report directly to the SVP, scientific program director.


  • Serve as primary contact with vendor to ensure appropriate communication channels are maintained and schedules adhered to.
  • Develop, implement, and lead continuous improvement of case report forms.
  • Manage ongoing relationships with data entry sites.
  • Ensure registry training programs are properly implemented and maintained.
  • Interface with registry vendor on registry implementation, modification, data management and site training.  
  • Manage ongoing relationships with industry partners.
  • Participate in proposal and budget development, evaluate feasibility of potential programs and impact on registry operations and goals.
  • Prepare presentations and reports for stakeholders such as industry, Care Centers, MDA staff, and families.
  • Coordinate activities of team members to carry out registry objectives.
  • Interact with internal and external entities including registry governance committee, legal experts, regulatory agencies, and central IRB vendor to ensure proper functioning of the registry.
  • Travel to conferences, data hub sites and meetings as required.
  • Perform other duties as assigned.

MDA is an Equal Opportunity/Affirmative Action employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, disability, or protected veteran status.



  • Leadership - Exhibits confidence in self and others; Inspires and motivates others to perform well; Effectively influences actions and opinions of others; Accepts feedback from others; Gives appropriate recognition to others.
  • Communication Skills - Clearly and persuasively communicate, listen and seek clarifications; participate in meetings, write clearly and informatively
  • Professionalism - Work well in a fast-paced environment; treat others with respect and consideration; accept responsibility for own actions. Understand business implications of decisions, align work with strategic goals, complete administrative tasks and develop strategies to achieve organizational goals.
  • Teamwork – Balances team and individual responsibilities; Exhibits objectivity and openness to others’ views; Gives and welcomes feedback; Contributes to building a positive team spirit; Puts success of team above own interests; able to build morale and group commitments to goals and objectives: Supports everyone’s efforts to succeed.
  • Innovation - Displays original thinking and creativity; Meets challenges with resourcefulness;
  • Generates suggestions for improving work; Develops innovative approaches and ideas; Presents ideas and information in a manner that gets others' attention
  • Organizational Support - Follows policies and procedures; Completes tasks correctly and on time; supports organization's goals and values; Supports affirmative action and respects diversity.


  • Bachelor's degree in life sciences, nursing or related field.
  • 7-10 years clinical research and/or registry experience including 3 years leadership experience or equivalent combination of education, training and experience.
  • In depth knowledge of, and skill in applying, applicable clinical knowledge and registry operational knowledge.
  • Demonstrated financial management skills, including project financial tracking and accounting methods.
  • Excellent oral and written communication and interpersonal skills.
  • Excellent organization and problem-solving skills.
  • Strong presentation skills.
  • Ability to balance operational and strategic priorities.
  • Demonstrated knowledge of HIPAA and IRB guidelines.
  • Highly effective team leadership skills.
  • Sound judgment and decision-making skills.
  • Strong software and computer skills, including MS Office applications.