The MHFP Database
The MHFP Database gathers patient information into a UChicago REDCap database. The information is extensive, This information, along with similar information from several collaborating institutions, will be shared and used to monitor and improve patient care and outcomes. The project’s sponsor, The Margaret Hackett Family Center for the Treatment and Study of Congenital Anomalies of the Nervous System (MHFC), is mostly (though not exclusively) interested in central nervous system congenital disease which will be the initial focus of the project. Benchmarking data will allow the collaborating sites (known together as the “consortium”) to better document and understand where areas for quality improvement exist. Additional specific information about the project is included in the protocol presented below. This project will collect extant retrospective patient data from both paper and electronic medical records (EMRs) as well as data collected from patients who agree (or who’s proxy agrees) to participation. In its final form, the combined database from all participating institutions should be absent of any identifying information.
Who is involved with the Margaret Hackett Family Program (MHFP)?
The Margaret Hackett Family Program (MHFP) is a donor-funded program, established and supported by individuals who can appreciate the physical, developmental, and emotional challenges that children and adults may experience with congenital anomalies of the central nervous system. We currently have collaborating sites located in Los Angeles, CA, Boston, MA, and Charlotte, NC. For our staff directory, please click here.
How can the MHFP help patients navigate their care at UChicago Medicine?
We can assist patients and their families to:
- Identify and understand which provider may be best for their or their child’s condition.
- Navigate the process of scheduling an appointment with a provider.
- Identify who may be best to contact for what in each situation.
- Contact the provider’s team and/or establish a relationship with the provider’s team.
- Connect their neurosurgical care to the care provided by other physicians at different facilities.
- Obtain their neurosurgical records in preparation for other appointments, and/or for their own personal records.
- Obtain medical reports in preparation for appointments within the office of neurosurgery.
- Establish neurosurgical care with the University of Chicago by initiating the appointment process.
- Answer any questions or concerns they may have and more…