Registry at U.S. Cord Blood Bank May Be Valuable for Characterizing Cerebral Palsy Patients, Study Shows

Registry at U.S. Cord Blood Bank May Be Valuable for Characterizing Cerebral Palsy Patients, Study Shows

Data collected from a registry established at a private U.S. cord blood bank called the Longitudinal Umbilical Stem cell Monitoring and Treatment Research (LUSTRE) may provide valuable information about patients with cerebral palsy, according to researchers.

Their findings were published in the study, “Comparison of children diagnosed with cerebral palsy in a private cord blood bank to an epidemiological sample,” in the journal Research in Developmental Disabilities.

For this study, scientists from Mazonson & Santas, the Cord Blood Registry (CBR) and the Olson Huff Center at Mission Children’s Hospital in Asheville, North Carolina, compared children diagnosed with cerebral palsy enrolled in LUSTRE to those included in another registry called the Autism and Developmental Disabilities Monitoring (ADDM) Network (ADDM).

Information from the ADDM Network is commonly used to provide insight into the origin and characteristics of various developmental disabilities, including cerebral palsy.

Funded by the U.S. Centers for Disease Control and Prevention, this public database was designed to estimate the number of children with autism spectrum disorders and other diseases living in the U.S. and to better inform the medical and scientific communities about neuropsychiatric diseases.

The LUSTRE registry was recently established at the largest private U.S. cord blood bank to help researchers study the clinical characteristics of children with neurological disorders, describe treatment features, and compare long-term clinical data.

To do so, the observational registry identifies and tracks families who have both stored their children’s cord blood at the cord blood bank and have children with selected conditions currently being treated or being investigated for treatment with cord blood. These children were identified in Phase 1 of the study.

Cord blood is a long-known source of different cell types, including stem cells, a type of cell capable of promoting the repair of damaged tissues. These cells represent a promising treatment for numerous conditions, including cerebral palsy.

As of November 2016, 121,411 families had completed the LUSTRE surveillance questionnaire, of whom 429 (0.35%) reported a possible cerebral palsy diagnosis in a child with access to his or her own stored cord blood.

Of these 429 families, 221 decided to enroll in Phase 2 of LUSTRE, including 114 with a child who had a confirmed cerebral palsy diagnosis. Phase 2 of the study involves collecting data annually on the children identified in Phase 1.

Researchers compared demographics, coexisting conditions, and motor function, measured by the Gross Motor Function Classification System (GMFCS) level and walking ability, between the 114 LUSTRE patients and 451 ADDM Network patients with cerebral palsy.

Participants younger than 4 (28.9%) were excluded from the LUSTRE group when comparing clinical characteristics and coexisting conditions, in order to focus on children with more stable diagnoses and motor function.

Results showed that while there were differences in the demographics between the two groups, the clinical profiles of the patients were similar.

LUSTRE children were more likely to be white (79.8%), than those in the ADDM registry (51.6%). More than half of LUSTRE children were male, similar to the ADDM registry.

No differences were observed regarding the frequency of coexisting conditions, specifically autism and epilepsy, and participants’ motor function between the two registries.

These findings confirm the potential of LUSTRE to be used as a large source of data to advance knowledge about cerebral palsy in the medical community.

“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,” the researchers said. “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.”

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