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Knowledgeable and compliant in all hospital State and Federal regulatory requirements including hospital policy and procedures (where applicable to the performance of the job) Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and Health Insurance Portability and Accountability Act of 1996 (HIPAA).
Under general supervision of the Principle Investigator and Neurogenetics Program Director the Nurse Practitioner is responsible for helping to direct aspects of research studies and therapeutic trials in patients with pediatriconset neurogenetic disorders and assist in the clinical care and management of patients seen within the multidisciplinary neurogenetics and neuromuscular clinics as within the scope of the appropriate nursing license for Massachusetts.
The nurse practitioner serves as a primary resource for both clinical care and research and supervises the implementation of research protocols and clinical trials within the neurogenetics program.
She/he evaluates patients in the clinical setting and also identifies and recruits eligible patients for ongoing clinical studies and trials in the appropriate context.
She/he collects compiles tabulates and analyzes data for the principal investigator and coordinates related patient care activities in the inpatient and outpatient setting.
Interacts comfortably in evaluating and caring for neonates infants children and in some circumstances adults and assessing their responses to study protocols.
She/he provides consultation to primary physicians as well as other primary team members including other nurses genetic counselors technicians or clinical research coordinators regarding protocol implementation consistent with good clinical practice and plays a major role in supporting and educating parents and patients.
She/he also contributes to clinical documentation as well as the collection and preparation of data for research publications.
Additional job responsibilities may include opportunities for community education and outreach and to present study findings to interested groups both inside and outside of the hospital and at national and international meetings.
Using the principles of good clinical practice he/she coordinates and implements research according to the study protocol provides input for data form development;
Performs required nursing procedures including blood draws assists the PI with other procedures as necessary including intrathecal injection or skin biopsy and supervises the appropriate collection and preparation and shipping of samples;
Collaborates with the principal investigator on an ongoing basis regarding progress of the study and the continuation or termination of study subjects; works with other collaborating physicians nurses and patients in the selection of and participation by appropriate research subjects for a given protocol; obtains all necessary approvals and informed consent forms;
Screens and enrolls patients into studies in close collaboration with the PI;
Assesses patient and parent participation on a continuous basis in light of ethical considerations;
Acts as liaison between patient and other members of the team regarding patient care activities relating to the research protocol.
Responsible for IRB submissions for protocols. May require travel to research study subjects home for study visits.
Full-Time