Pario Group is a genetic research effort to store samples from cohorts of congenital birth defects in children in order to improve doctors’ abilities to assess the long-term outcomes of treatment for patients with these conditions. The Pario Group (‘Pario’ or Latin for ‘to bear’) is an initiative aimed at understanding the neurological conditions that affect children before and shortly after birth. Congenital birth defects are common and are major contributors to infant mortality, accounting for 20% of all infant deaths. Birth defects are common and affect 1 in 33 infants born in the United States each year.
Pario Group is led by Greg Heuer, MD, PhD, an attending neurosurgeon in the Division of Neurosurgery at CHOP, who proposed to establish the congenital defect biobanking efforts with support from the Center for Data Driven Discovery in Biomedicine. This study will focus on birth anomalies such as spina bifida, encephaloceles, hydrocephalus, tethered cords, and brain malformations.
This registry should lay the ground for a widespread collection of biospecimens, as well as clinical and genetic database focused on patients with congenital and prenatal neurological conditions. With the support of D3b and this database, we will be able to increase our ability to identify novel genes and biomarkers, and collaborate on existing genetic data that has been generated in a research context. Pario Group’s long-term goal is to include national groups such as the Children’s Hospital Neonatal Consortium.
- Provide a comprehensive protocol to recruit patients with congenital and/or prenatal neurological conditions; spina bifida, encephaloceles, hydrocephalus, tethered cords, and brain malformations
- Provide a protocol that allows for sharing of clinical and genetic data.
- Allow sharing of genomic data using cloud-based data storage solutions
Dr. Gregory Heuer, Principal Investigator – email@example.com
Ena Agbodza, Clinical Research Coordinator – firstname.lastname@example.org