Yesterday the Cerebral Palsy Research Network announced a partnership with Datavant Corporation of San Francisco, CA, to enable linking of data sets to accelerate new findings in cerebral palsy (CP) research.  The CP Research Network will initially use data linking technology to facilitate the CP Genetics study we are launching next month.  Data linking allows researchers to combine types of information such as genetics and patient descriptions, from different sources to make new discoveries.  For example, participants in the CP Genetics study will provide saliva to Dr. Michael Kruer’s lab at the University of Arizona to identify new genes that are involved in causing CP.  That genomic data will be linked to the participants’ clinical characteristics, or medical description of their CP, found in our CP registry.  This linkage will allow us to find commonalities between genes and how CP appears in the patient population. 

“It is an exciting time in cerebral palsy research,” said Kruer, a neurogeneticist in the Barrow Neurological Institute at Phoenix Children’s and associate professor at the University of Arizona College of Medicine – Phoenix. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.” 

Datavant’s data linking technology is unique because it allows this type of information to be connected independent of the timing of annual hospital visits for CP and the choice to be in the study.  Datavant software generates a unique set of identifiers per patient that stored with a medical record but are devoid of any personal identifying information.  The software can be used by new studies such as the genetics study to find matches between patient records and participants’ genes.  This matching process can help facilitate new discoveries in CP by connecting new study data to our CP Registry. The CP Research Network is actively pursuing other existing study datasets that could be linked with our registry to enable new findings to improve healthcare for people with CP.