Featured below are some frequently asked questions about the services we provide:
Q: How was the oncology clinical data warehouse established?
A: As reported in an early joint publication 10.1177/1176935117694349, the Clinical Data Warehouse project started at Rutgers Cancer Institute of New Jersey to address the growing need of a newly established Precision Medicine Initiative. The Warehouse operates under the guidance of the Joint Executive Data Governance Committee which comprised of a cross-section of physicians, scientists, administrators, and bioinformatics and IT experts with representation from both RWJBHS and Rutgers University.
Q: What is Precision Medicine and what is the Precision Medicine Initiative at Rutgers Cancer Institute of New Jersey?
A: Precision medicine as it pertains to cancer is a personalized approach to deliver the most appropriate treatments to patients based on the underlying characteristics of that specific patient’s cancer. The Precision Medicine team at Rutgers Cancer Institute reviews results from cancer DNA (or gene) sequencing analyses, as well as patient’s medical history to make recommendations on potential treatments. One’s gene changes may be similar to changes in other cancer types, broadening the range of potentially helpful treatments for the cancer. Also, new therapies targeting the changes seen in one’s cancer may be used in clinical trials, providing additional options. Precision medicine helps physicians make informed decisions on the most personalized and effective ways to treat cancer for each individual patient. Rutgers Cancer Institute of New Jersey has been at the forefront of such cutting-edge science since 2013, even before the launch of a bipartisan national precision medicine initiative in 2015.
Q: What areas of data are available for oncology related research?
A: The oncology data warehouse contains demographic information, clinical information such as medical history, social history, diagnoses, cancer staging, pathology information including staging and synoptic reporting, treatment information, genetic testing results, as well as information related to cancer specimens that have been meticulously banked for research purposes.
Q: Shouldn’t all this information be already available in the Electronic Health Record system?
A: Absolutely not. The EHR system is not the only data source of the Warehouse. With approval from the Institutional Review Board, the oncology clinical data warehouse also aggregated data from originating from genomic sequencing studies, digital pathology archives, radiologic images, linked biospecimens databases, as well as other research-generated data records. In addition, specific workflows are in place to process unstructured text information and transform those sources into searchable discrete data elements to support research needs.
Q: Should we worry about Protected Health Information(PHI) being accessed without proper approval?
A: No. Please see the answers above on data security and data governance. IRB, Data Governance Committee, IT specialists and Honest Broker system jointly ensure that only necessary and approved data is provided to researchers.
Q: What constitutes the oncology clinical data warehouse?
A: In short, the Warehouse regularly aggregates updated data from multiple otherwise disparate sources using an automated ETL (extract-transform-load) process.
Q: What is the Rutgers COVID-19 Project?
A: In a race to monitor, study and understand the clinical course of this deadly virus SARS-Cov-2, Rutgers joined fellow institutions in the region as well as nationally in extracting and organizing COVID-19 related clinical data into common data model (OMOP) to be included in de-identified nationwide data set.
Q: What is the common data model used in this project and how is it helping our fight with COVID and other diseases?
A: The Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) enables the capture of information (e.g., encounters, patients, providers, diagnoses, drugs, measurements and procedures) in the same way across different institutions. It has been used by the community to form inter-institutional research studies. Especially at the critical time of the pandemic, the research community formed Study-A-Thons leading to important findings across the world.
Q: What made the COVID-19 Project possible at Rutgers?
A: Though we didn’t know at the time, all the security details designed, governance discussed and experts assembled for the CRDW became critical elements to enable the COVID-19 project to be pulled together in a short time.
Q: Our fight with COVID-19 seems to have succeeded with the application of vaccines. Why do we still need this project?
A: The data and infrastructure that we are capturing in this project will continue to be utilized to enable studies from many important perspectives – How our medical system reacted to the crisis and is there room for improvement? How were our patients recovering from long term effects? How well are the vaccines protecting our communities over time? And most importantly, we need to be best prepared when the next pandemic shall emerge, as the scientific community knows it will.
Q: How do I access the data that I have been granted to?
A: You will sign-in to a Citrix site where you will see a “Desktop” available to you and from there you can access the tools and the data that has been granted to you.
You must have the Citrix receiver installed. –Link to Citrix receiver…
Log in with Netid/PW. Two Factor authentication is required.
Choose Desktop and then choose the desktop that has been assigned to you.
Q: How do I go about becoming a tenant in the CRDW?
A. If you would like to store your own data in the CRDW for further analysis and research, you can complete the online form on the CRDW website and someone will contact you with the next steps.