The JH-CROWN registry is a collection of information about patients having suspected or confirmed COVID-19 infection.
The main data source for JH-CROWN is the Johns Hopkins’ electronic medical record, Epic, but the JH-CROWN registry also includes data from other sources such as physiologic device monitoring systems, Research Electronic Data Capture (REDCap), and biospecimen repositories. The JH-CROWN registry is securely hosted on the Precision Medicine Analytic Platform (PMAP), a research discovery platform supporting data exploration and analysis developed by the Johns Hopkins inHealth initiative, a collaboration between the schools of Medicine and Public Health, the Johns Hopkins Applied Physics Laboratory, the Technology Innovation Center, and the Institute for Clinical and Translational Research. The registry is refreshed weekly with new and updated data and is available for Johns Hopkins investigators to analyze subsets of the COVID-19 patient population for retrospective analyses.
IRB approval is required for access to JH-CROWN data. Note that JHM also contributes data to the National COVID Cohort Collaborative (N3C) Data Enclave, a centralized, secure, national clinical data resource with powerful analytics capabilities that the research community can use to study COVID-19.
To access data to support COVID-19 Research, visit https://ictr.johnshopkins.edu/covid-research-center/review-committees/cadre.
Data Elements Overview
The following data elements are currently available or will soon be available in the JH-CROWN registry. Note that explicit IRB approval is required to gain access to protected health information. Data can also be delivered as a HIPAA limited dataset or a fully de-identified dataset. Please contact Bonnie Woods at firstname.lastname@example.org if you have questions.
For details, expand each title.
Patients (all ages) seen at any Johns Hopkins Medical Institution facility (both inpatient and outpatient, in-person or via video consult or lab order) since 1/1/2020 documented in Epic as having confirmed COVID-19 or suspected of having COVID-19.
The cohort is defined as follows:
- Having a completed laboratory test for COVID-19 (whether positive or negative)
- Having and ICD-10 diagnosis of COVID-19 (either recorded at the time of the encounter, entered on the problem list, entered as medical history, or appearing as a billing diagnosis)
- Flagged as a “patient under investigation” for suspected or confirmed COVID-19 infection (Infection flag)
Patient name, date of birth, gender, race, ethnicity, contact information (address, geocoding, email, phone), marital status, study enrollment, death date (if applicable).
Including Emergency Department and all inpatient admissions. Admission source, admission and discharge dates/times, discharge disposition, facility location.
ED and Inpatient – event type, in date/time, out date/time, department name, service, event.
ICD-10 coded diagnoses recorded at the time of the inpatient admission or the outpatient visit.
All JHM outpatient facilities. Encounter date, department, specialty, visit provider, encounter type, encounter status, last recorded vitals (temperature, BP, BMI).
ICD-10 coded diagnoses recorded on the Problem List.
Specimen collection date/time, result date/time, lab name, value (text or numeric), units, reference ranges, ordering department, order date.
Medications present on the patient’s medication list at the time of the encounter and ordered during the encounter. Medication name, ordering date, start/stop dates, discontinuation reason, dose, instructions, therapeutic class, pharmaceutical class, pharmaceutical subclass.
Medications administered during the ED or inpatient admission. Medication name, ordering date, start/stop dates, discontinuation reason, dose, frequency, route, therapeutic class, pharmaceutical class, pharmaceutical subclass.
Measures and date/times recorded for ED/Inpatient admissions and outpatient encounters. Includes vitals, respiratory therapy (RT) assessment, pain, IV sedation medications, and more.
Procedure names, date/times of service for imaging procedures, as well as ECGs. Note that explicit IRB approval is required to receive full-text study reports. Chart review through Epic is often the preferred method of review.
Smoking status, alcohol and illicit drug use.
Coming soon – signs and symptoms from progress notes, H&P, ED notes, annotated by clinicians and processed using Natural Language Processing algorithms. Full-text notes will not be available through the registry.