12 March 2021
Datavant and the Cerebral Palsy Research Network Announce Partnership to Enable Investigation of Genetic Basis of Cerebral Palsy
San Francisco and Salt Lake City, March 04, 2021 (GLOBE NEWSWIRE) — Datavant, the leader in helping healthcare organizations safely connect their data, and the Cerebral Palsy (CP) Research Network, a group of doctors, therapists, and patient advocates collaborating to improve treatment and outcomes for people with cerebral palsy, announced a partnership to enable an investigation on the genetic basis of CP using Datavant technology.
The CP Research Network will use Datavant’s patient-level, privacy-protecting linking technology to link multiple datasets across 30+ academic medical centers. A study led by researchers at the Barrow Neurological Institute at Phoenix Children’s Hospital and the University of Utah will seek to discover new CP genes using this technology.
“Data fragmentation today prevents researchers from having the complete view into a patient’s history. Our partnership with the CP Research Network will enable researchers to gain a deeper understanding of the genetic basis of cerebral palsy, improving our understanding of this disease and in turn, enabling faster development of therapies,” said Travis May, Chief Executive Officer at Datavant.
A National Institutes of Health-funded study of CP genetics led by Michael Kruer, M.D., director of the Pediatric Movement Disorders Program at Barrow Neurological Institute at Phoenix Children’s Hospital, will implement Datavant technology to link genomic mutations that cause CP with patient characteristics in the CP Research Network’s registry. The privacy-preserving linkage will be led by Dr. Jacob Kean, Associate Professor in Health System Innovation and Research, Department of Population Health Sciences, University of Utah. CP Research Network was founded by Paul Gross.
“It is an exciting time in cerebral palsy research,” said Gross, President and CEO of the CP Research Network. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.”
“We are proud to serve as the genomics research hub for the network as we know that easily accessible, comprehensive data will yield better treatment options for years to come,” said Dr. Kruer. “This study represents an important advance and will couple cutting-edge genomic discoveries with real-time clinical data in order to bring precision medicine to the CP community.”
A webinar discussing the CP Research Network and how it is using Datavant will take place on March 30 at 10 am PT. To register, click here.
More information on the study can be found here.
The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research, and we focus our research on the health and wellness outcomes that people with cerebral palsy value most. We include the entire community in the research process, the development of education materials, and the implementation of current clinical care pathways.
To learn more, visit us at https://cprn.org/.
Cerebral Palsy Research Network
Phone: 402 302-CPRN (2776)
Datavant’s mission is to connect the world’s health data to improve patient outcomes. Datavant works to reduce the friction of data sharing across the healthcare industry by building technology that protects the privacy of patients while supporting the linkage of de-identified patient records across datasets. Datavant is headquartered in San Francisco. Learn more about Datavant at www.datavant.com.
Sarah Rowe, Head of Marketing