Human Research

Expertise and Resources in Patient-Reported Outcomes Measurement and Assessment

The Center for Patient-Centered Outcomes within the Institute for Public Health and Medicine (IPHAM) are committed to explicitly include patients at the center of healthcare delivery.

Investigators interested in implementing patient-reported outcomes into study designs can benefit from expertise on the best ways to measure and analyze outcomes collected by self-report among culturally diverse populations.

Expertise and Resources in Bioinformatics

Northwestern Medicine Enterprise Data Warehouse (NMEDW) is a comprehensive repository of all clinical and research data sources. It has a mature data steward model that enables rapid review of data requests. The NMEDW currently stores data on 6.7 million patients. Each night it loads new data from electronic health records, pathology data from the hospital and research laboratories, biomarker data from research databases, and research transactional data from IRB and other institutional systems.

We will leverage existing resources through the Northwestern University Clinical and Translational Sciences Institute (NUCATS) and its Center for Biomedical Informatics and Data Science and the Northwestern Transplant Outcomes Research Collaborative to assist investigators with accessing the NMEDW to enable application of innovative informatics solutions to clinical and translational research.

The NMEDW is also a resource for the NUgene Project, which is a cohort of patients at Northwestern University–affiliated hospitals and outpatient clinics providing biological samples and medical information to research the causes of common diseases and therapeutic outcomes. Among this cohort, nearly 3,000 patients have CKD and almost 2,000 of them have been genotyped. These unique tools will provide innovative opportunities for center investigators.

Expertise and Resources in Human Biosamples

The Biorepository Core at the Northwestern University Comprehensive Transplant Center collects fully annotated human kidney biopsy tissue from transplanted kidneys. The Biorepository staff are highly trained and can easily expand the current collection to include kidney tissue from healthy individuals who donate a kidney and from individuals with acute kidney injury or CKD.

The Center for Translational Metabolism and Health within IPHAM houses a collection of blood and urine samples from healthy volunteers and from patients with CKD across the spectrum of kidney function, including from those undergoing peritoneal dialysis.

Together, these specimen portfolios can support translational pilot and feasibility studies aimed at testing novel mechanistic pathways that may have therapeutic potential.

Expertise and Resources in Bioethics and Community Engagement

Through resources available through the Center for Community Health and the Center for Bioethics and Medical Humanities, we can enable investigators to launch innovative programs of community-engaged research of the highest ethical standard to address issues related to kidney diseases that are of utmost importance to the community.