The Data Network Request provides data to determine the feasibility of using PCORnet for a potential study. Requests are typically pre-research or prep-to-research queries, submitted when a requestor plans to collaborate with PCORnet and its Distributed Research Network Operations Center (DRN OC) to obtain aggregated results for informing the development of a research project.
PCORnet is made up of 33 partner networks, and the DRN OC can currently query data from the 13 Clinical Data Research Networks (CDRN). Queries can be executed against data that have been standardized into the PCORnet Common Data Model (CDM) and for which there are existing tools that reference the desired tables.
The Submission and Review Process
Before submitting a request, it is important to familiarize yourself with the PCORnet CDM, data summaries, and current tools to ensure that the question posed can be answered. The first step of the official process is to complete the PCORnet Front Door Request Form, including the Data Network Request section.
Following an administrative review by the Front Door, your request will be reviewed by the DRN OC for feasibility. The DRN OC will prepare an initial assessment and plan for Requestor review. Once the Requestor agrees to the plan, query specifications will be formalized and provided to the Requestor for approval. Following this approval, the query will be developed and distributed to the partner networks, the results consolidated, and a final report provided back to the Requestor. It is common for follow-up emails or phone calls during the process to answer questions from the DRN OC, discuss alternative ways to frame a research question based on the available data, and review the query specifications and final report. Updates regarding turnaround time will be provided throughout the process. Use the downloadable Request Form Template to preview the Front Door request questions and compile your information ahead of time.
Learning Resources: PCORnet Common Data Model and Analytic Tools
The PCORnet CDM allows for data from heterogeneous sources to be standardized into a common format, which enables the use of distributed query tools. Through data curation, the DRN OC works with partner networks to: a) ensure that data are formatted according to the CDM specifications, b) describe the missingness of tables and fields, and c) continually increase the quality of the data populating the model.
The DRN OC queries the partner networks using tools such as Menu-Driven Queries (MDQ) and SAS analytic tools. Each type of tool is capable of querying certain tables. Tools are currently in development to rapidly query data from the prescribing and dispensing tables, with planned implementation in the summer of 2017. The labs table needs to be examined on a case-by-case basis.
Example of a Data Network Request
A researcher is interested in submitting a proposal for a clinical trial that will examine outcomes of a specific intervention on primary and secondary outcomes. The proposal will plan for patients to be recruited from, and outcomes ascertained using, PCORnet. But first, the researcher would like to assess the potential study population available at sites within PCORnet to: a) provide preliminary data for the application, b) conduct power calculations, and c) identify target-rich sites to see if they would be interested in participating in the project, if funded. Therefore, the researcher submits a data network request to obtain counts of patients that meet their inclusion/exclusion criteria that are available in the PCORnet CDM.
Sample Inclusion and Exclusion Criteria
|Inclusion Criteria||Exclusion Criteria|
|Age 18 or older||Currently pregnant|
|Ability to read and speak English||Life expectancy <6 months|
|Diagnosis of COPD|
|Have not had a lung volume reduction operation|
Based on these criteria, a query to assess the counts of patients at partner networks who are: a) over 18, b) have been diagnosed with COPD, and c) do not have a history of a lung volume reduction operation would be constructed. These counts could be provided at the PCORnet-level or, as needed, broken down by partner network.
If the study was funded, a similar query could be used to identify a potential pool of patients for recruitment, however certain variables such as life expectancy < 6 months, currently pregnant, or a lung volume reduction operation since the last update of the data would still need to be confirmed with the partner networks.