Public Use Datasets

Data from CPCCRN studies constitute an important scientific resource. To enhance the public health benefit of these studies, public use datasets will be made available to qualified researchers.

CPCCRN public use datasets are generally made available after study completion in accordance with CPCCRN policy. CPCCRN datasets will be provided only to investigators who agree to adhere to the signed research data use agreement.  Execution of a research data use agreement will require approval by investigators’ relevant Institutional Review Boards (IRB) or demonstration of exemption from the need for IRB approval by institutional policy.  Dataset creation and distribution will be performed by the data coordinating center.

Definitions:

Public Use Dataset – De-identified dataset derived from completed CPCCRN research protocols.

Research Data Use Agreement – Agreement between the recipient institution, investigator and the data coordinating center, governing the use of the specific dataset.

Procedures:

The data coordinating center will provide the dataset on a CD or DVD as SAS datasets or CSV text files.  Electronic copies of the data worksheets, the final study protocol, and a data dictionary will be provided on the disks.  No further support will be provided by the data coordinating center, network investigators, or NICHD, to the recipient investigator.

Investigators will request the use of a specific dataset by submitting a formal request that includes;

  • a research plan describing the proposed research
  • a signed data Research Data Use Agreement (RDUA)
  • approval from the researcher’s IRB for use of the dataset or documentation that the use of public datasets is exempt from IRB review by institutional policy

The data coordinating center will disseminate the dataset after receipt of the aforementioned items.

Contact: For further information contact Whit Coleman, BSN, RN, CCRC, CPCCRN Data Coordinating Center Director.

Available Study Datasets from CPCCRN Research Projects

 

Study Name Resource Available
CPCCRN Core Data Project (CCDP): Characterizing Patient Populations in the Collaborative Pediatric Critical Care Research Network (CPCCRN) Datasets, Forms, Data Dictionaries
The Critical Illness Stress-induced Immune Suppression Prevention Trial (CRISIS) Datasets, Forms, Data Dictionaries
Cortisol Quantification Investigation: Prospective, Observational Study Comparing Free versus Total Serum Cortisol in PICU Patients (CQI) Datasets, Forms, Data Dictionaries
Critical Asthma Mortality and Morbidity Planning Study Datasets, Forms, Data Dictionaries
Measuring Opioid Tolerance Induced by Fentanyl (or Other Opioids) Datasets, Forms, Data Dictionaries
Pediatric Intensive Care Unit Bereavement Study Datasets, Forms, Data Dictionaries
Development of a Quantitative Functional Status Scale (FSS) for Pediatric Patients Datasets, Forms, Data Dictionaries
Bleeding and Thrombosis During ECMO (BATE) Datasets, Forms, Data Dictionaries
Translating an Adult Ventilator Computer Protocol to Pediatric Critical Care (VENT-1) Datasets, Forms, Data Dictionaries
Trichotomous outcome Prediction in Critical Care (The TOPICC Study) Datasets, Forms, Data Dictionaries
If you are interested in using the Therapeutic Hypothermia After Pediatric Cardiac Arrest (THAPCA) Trials Out of Hospital Public Use Dataset, please click here to start the process. The OH PUD is housed at BioLINCC, the biologic and data repository for the National, Heart, Lung, and Blood Institute. Datasets, Forms, Data Dictionaries

Other Datasets of Potential Interest to Critical Care Researchers

The datasets below were produced from research conducted in the Pediatric Emergency Care Applied Research Network (PECARN) and the Therapeutic Hypothermia After Pediatric Cardiac Arrest (THAPCA) and may be of interest to critical care researchers. Use the links below to obtain additional information concerning these datasets.