| Position Overview:
Coordinates research recruitment, communications with research participants and families, phenotype data collection, database maintenance, and data analytics for the Paul and Sheila Wellstone Muscular Dystrophy Center (MD Center) at the University of Minnesota. Works as part of a multidisciplinary team including physicians, research coordinators, physical therapists, and nurse practitioners. As the research programs grow, opportunities may be explored to assemble and lead a team that includes genetic counseling students and research assistants.
This position does not involve direct clinical genetic counseling, but there will be abundant opportunities to interact with research participants in person and remotely.
All University regulations and guidelines regarding infection control and social distancing will be observed.
Duties and Responsibilities:
70% - Muscular Dystrophy Center activities, including tasks listed below and the establishment, maintenance, and enhancement of resources for all MD Center investigators.
1. Monitors neuromuscular clinic schedules to ascertain potential research participants.
2. Attends neuromuscular clinics as assigned to recruit and consent research participants.
3. Pursues opportunities to recruit and consent research participants outside the University of Minnesota system.
4. Collects, stores, and abstracts phenotype data from medical records.
5. Coordinates collection of relevant tissue samples from enrolled research participants, including saliva samples, blood samples, and clinical muscle biopsy samples. These collection activities may occur in person or remotely depending on the context for a particular participant.
6. Establishes, maintains, and updates secure databases with research records, including repositories and data/tissue banks.
7. Coordinates the storage and distribution of tissue samples as needed.
8. Interacts with patient advocacy groups as needed.
9. Performs associated administrative tasks, which may include special projects, correspondence, and participation in fundraising activities.
25% - Conduct research in the specific areas of the lab of Dr. Peter Kang, Director of the MD Center. This will include research in limb-girdle muscular dystrophy.
5% - other duties as assigned. |
