Research Program Coordinator I Sickle Cell Disease (CIBMTR)

Work closely with the Center for International Blood and Marrow Transplant Research (CIBMTR) Senior Scientfic Director Protocol Team members and other Research Coordinators and staff to coordinate the daily administrative activities for a new Sickle Cell Disease (SCD) study focused on long-term follow-up of individuals living with SCD who received either hematopoietic stem cell transplant or gene therapy. Provide support to the team to facilitate the achievement of the programs goals.

• Organize and coordinate internal and external meetings site visits educational events and other program-related activities. Coordinate program outreach activities by servings as a liaison with community organizations advocacy groups (such as Sickle Cell advocacy groups) and partner institutions. Assist with planning and coordination of external engagement opportunities such as podcasts webinars and educational seminars.

• Coordinate day-to-day program operations maintain program timelines and track milestones and deliverables to ensure timely completion of program activities.

• Develop maintain and update program databases participant records and other program documentation to ensure data accuracy organization and regulatory compliance with institutional regulatory and study requirements.

• Coordinate research protocol activities by collaborating with partnering institutions SCD clinical and treatment teams and study personnel to support compliance and participant follow up.

• Serve as a primary point of contact and patient advocate by facilitating communication between patients physicians researchers and CIBMTR. Support participant recruitment retention and engagement by addressing questions providing study information and promoting a positive research study experience.

• Collaborate on the development implementation and continuous improvement of educational marketing patient-facing research and training resources. Support dissemination of findings through abstracts manuscripts and reports.

• Collect track analyze and report program and research data; prepare reports dashboards and updates for investigators leadership sponsors and other stakeholders.

• Coordinate and support training activities for program participants clinical partners research staff and other stakeholders as appropriate.

• Participate on internal committees and external workgroups that support program initiatives organizational goals and professional development.

• Perform other duties as assigned.

• Knowledge of computers Microsoft Office quantitative and (potentially) qualitative research methods survey development mathematics documentation and records management.

• Organization time management interpersonal communication and problem-solving skills.

• Experience working with individuals living with sickle cell disease or other chronic conditions and demonstrated experience serving as a patient advocate or engaging with patient communities is preferred.

• Knowledge of the challenges faced by individuals and families affected by sickle cell disease is highly desirable.