At Longitudinal Umbilical Stem Cell Monitoring and Treatment Research (LUSTRE), a private U.S. cord blood bank, researchers say registry data may be able to provide important insight into patients with cerebral palsy.
The study compared children with cerebral palsy enrolled in LUSTRE to children of the same diagnosis in the Autism and Developmental Disabilities Monitoring Network (ADDM) registry.
The ADDM Network, funded by the U.S. Centers for Disease Control and Prevention, is frequently used in providing insight into many different developmental disabilities such as cerebral palsy, including their origin and general characteristics. It was designed to estimate the number of children on the autism spectrum or with other disorders and diseases in the U.S. and to help the medical and scientific communities in understanding these neuropsychiatric diseases.
The LUSTRE registry was established to help researchers study clinical characteristics, explain treatment, and compare long-term data in children with neurological disorders. The registry both identifies and tracks families who have both stored their children’s cord blood and have children with conditions that are currently being treated, or are being researched for potential treatment with cord blood. These children represent the study’s Phase 1.
Phase 2 of the study consists of children that came from families that answered a surveillance questionnaire as of November 2016. 121,411 families completed the questionnaire, and 429 families (0.35%) stated a possible cerebral palsy diagnosis in a child with access to his or her own stored cord blood. 221 of those families then enrolled in Phase 2, 114 of whom had a child with a confirmed diagnosis of cerebral palsy. Phase 2 also involves continuing to collect data annually on the children from Phase 1.
Cord blood has long been recognized as a source for different types of cells, including stem cells. Stem cells are capable of promoting and increasing repair in damaged tissues, and could be a promising treatment for many conditions of different origin, including cerebral palsy.
Participating scientists and researchers came from Mazonson & Santas, the Cord Blood Registry (CBR), and the Olson Huff Center at Mission Children’s Hospital in Asheville, North Carolina. For all 114 LUSTRE patients and 451 ADDM Network patients with cerebral palsy, researchers compared demographics, coexisting conditions, and motor function, as described by the Gross Motor Function Classification System (GMFCS) level and walking ability. However, patients younger than 4 (28.9%) were excluded from the LUSTRE group for comparisons of clinical characteristics and coexisting conditions, as this would allow data to reflect children with more stable diagnoses and motor function.
Between the two registries, LUSTRE and ADDM Network, results found no differences in the frequency of coexisting conditions, specifically autism and epilepsy, and participants’ motor function. This confirms the potential of LUSTRE in the future to be used as a large source of data on cerebral palsy that can further educate the medical community.
According to researchers, “The results of this analysis suggest that while children diagnosed with cerebral palsy and with access to stored cord blood differ from a broader population sample in terms of demographics, they have similar clinical severity and co-morbidity profiles… As such, LUSTRE may serve as a valuable source of data for the characterization of individuals with cerebral palsy, including individuals who have or will receive cord blood infusions.”
More information on the study, “Comparison of children diagnosed with cerebral palsy in a private cod blood bank to an epidemiological sample,” can be found in the journal Research in Developmental Disabilities.