How It Works

Comparative effectiveness research in cleft care is very difficult because, to date, few researchers would agree on which outcomes to measure, when to measure them, or how to measure them. To address this problem, we developed a “Standard Set” of outcome measures that was approved by multidisciplinary and international consensus. Outcome domains include speech, hearing, breathing, oral health and dental development, facial aesthetics, social and academic functioning, and self-confidence.

Typically, children with a cleft lip and/or palate need a mixture of care, from birth to adulthood, from professionals from different disciplines. This is why it is important to record information on these children from birth or diagnosis, to inform their care.

Real-World Data

Common Data Model

PCORnet’s Common Data Model standardizes millions of data points from a variety of clinical information systems into an innovative common format that can be used for specified research projects. The PCORnet Distributed Research Network (DRN) operations center and infrastructure, including the Common Data Model (CDM), is led by the PCORnet Coordinating Center and overseen by the governance established by PCORnet’s stakeholders.   The PCORnet Common Data Model (CDM) is a specification that defines a standard organization and representation of data for the PCORnet Distributed Research Network.  PCORnet is a national Distributed Research Network (DRN) sponsored by the Patient- Centered Outcomes Research Institute (PCORI).  PCORI’s objective is to create a “network of networks” to form a highly representative national infrastructure for research.

The PCORnet Common Data Model (CDM) has been developed to provide a standard organization and representation. The PCORnet CDM was originally based on the Mini-Sentinel Common Data Model v4.0 (MSCDM v4.0; and has been informed by other distributed initiatives such as the HMO Research Network, the Vaccine Safety Datalink, various AHRQ Distributed Research Network projects, and the ONC Standards & Interoperability Framework Query Health Initiative. The PCORnet CDM is positioned within healthcare standard terminologies (including ICD, SNOMED, CPT, HCPCS, and LOINC®) to enable interoperability with and responsiveness to evolving data standards.

ACCQUIREnet’s EHR-type data, provided via PCORnet, includes the following:


date of birth

date of death (if appropriate)

MRNs or other hospital identifiers



insurance (payor) type

location (county, ZIP, address)

clinical encounter dates

clinical diagnostic codes (ICD-9-CM and ICD-10-CM)

clinical procedure codes

treating facility


View the ACCQUIREnet's Standardized Outcome Assessments (Insert Link to PDF of REDCap Database):

  • Patient Reported Outcome Assessments
  • Provider Reported Outcome Assessments