Preparing to Request Clinical Data

Our dedicated team of experts ensures the secure and compliant retrieval of clinical data, enabling researchers to access critical patient information for their studies. Our data extraction services at UCSF empower researchers to unlock the full potential of medical data, facilitating groundbreaking discoveries and advancements in healthcare.

Clinical data extractions play a pivotal role in advancing medical research and improving patient care. Typical uses of clinical data extractions for research include:

1. Epidemiological Studies
2. Clinical Trials
3. Participant Recruitment
4. Outcome Assessment
5. Drug Safety and Surveillance
6. Predictive Analytics
7. Genomic Resesarch
8. Health Policy Analysis
9. Patient-Centered Research
10. Disease Surveillance

These uses of clinical data extractions not only advance medical knowledge but also contribute to the development of more effective treatments and healthcare strategies, ultimately benefiting patients and society as a whole.

"Our research would literally be impossible without this type of data extraction. It has completely transformed the scope of our research."

 

Michael Kattah, MD, PhD
Assistant Professor, Division of GI, UCSF

Clinical data extraction can involve various data types, each with its own set of compliance documentation requirements. These data types include:

• De-Identified Data: All personally identifiable information and protected health information are removed or masked, making it nearly impossible to trace data back to an individual. Examples include aggregate statistics, age, gender, and broad geographic information.
• Limited Data: All personally identifiable information and protected health information are removed or masked except dates and zip codes
• Identified Data: Data that contains one of the 18 protected health identifiers.

An active and approved IRB (Institutional Review Board) protocol related to the data requested is required for all identified or limited data extractions. The extracted data sets are delivered to you through your RAE (formerly MyResearch) account. This service offering includes both one-time and recurring data pulls.

To access data extraction results from RAE, please view these instructions.

Please complete the CTSI Consulting Services Request form.

$140 per hour

During the initial consultation, we will provide a time estimate for our team to generate the data that you are requesting for your research project.

Some projects may be eligible for a scholarship. Each scholarship covers up to 8 hours of work per researcher, per fiscal year

You will be offered an opportunity to apply for scholarship funds after you have met with one of our consultants and your data specification form is complete. Scholarship funding is not guaranteed. 

After our consultation takes place and we have all the required documentation, we will submit your request to ServiceNow for fulfillment. Once submitted, on average, it will take 30 to 45 days before a programmer is able to start your request.  Larger requests may take 3 to 4 months.

To speed up your data delivery, please have the following items ready when requesting a consultation.

• IRB Number: If your request contains PHI, we will need an IRB number to process the request to make sure everything is UCSF compliant. Ensure to double check your IRB has all the requested information and locations listed.
• SFDPH | UCSF Protocol Approval Letter: If you are requesting data from SFDPH, we will also need an approval letter from the SFDPH Research Protocol Application or SFDPH Research Proposal Approval.
• Funding Information: All services require a funding number to submit to ServiceNow for fulfillment. Funding numbers should follow this format:
  • Fund (4-digits)
  • Dept ID (6-digits)
  • Project (7-digits)
  • Function (2-digits)

• Policy Information: For information on UCSF Policies for Accessing data, please read the UCSF Control of Access Policy
• Contact us via Email: For additional Clinical Data Research Consultations support questions and information, contact the Academic Research Systems team at [email protected]
• Frequently Asked Questions: You can read more about our services by visiting our CDRC FAQ page or visiting our Requesting EHR Data Wiki Page