CP Patient Registry

Patient form with a pen

The Largest CP Patient Registries in North America

The Weinberg Family Cerebral Palsy Center maintains its own CP patient registry and also contributes to the Cerebral Palsy Research Network (CPRN) CP registry, helping expand CP research through both deep local data and large-scale multi-site collaboration.

By collecting consistent, longitudinal information over time, registries help researchers and clinicians understand how CP affects health across the lifespan, evaluate outcomes, and identify which interventions work best for which individuals.

Purpose

Our registry work aims to strengthen CP care and research by building reliable, real-world data that can be used to:

  • Describe CP and related medical conditions across childhood through adulthood
  • Study outcomes and quality of life over time
  • Compare approaches to care across sites
  • Accelerate studies that answer questions the CP community values most

Weinberg Family Cerebral Palsy Center Patient Registry

The Weinberg Family Cerebral Palsy Center's research team maintains a cerebral palsy patient registry of over 1,000 enrolled patients. Through both prospective data collection and retrospective analysis, the team continues to build this important research tool to expand our understanding of CP and related medical conditions.

The registry allows our researchers to capture a more complete picture than ever of the full scope of patients living with CP and offers a solid platform for multidisciplinary longitudinal research focused on outcomes-related long term care. With 10 to 15 years of data, it is now possible to study cerebral palsy across the life span.

E-Consent is available for the patient registry. To learn more, contact cpresearch@cumc.columbia.edu

Cerebral Palsy Research Network (CPRN) Cerebral Palsy Registry

The Cerebral Palsy Registry is CPRN’s core data project and is built from patients enrolled at CPRN participating centers. It includes demographic and diagnostic information, clinical classification details, and information about medical, orthopedic, neurosurgical, and therapy interventions, along with patient-reported goals and outcomes.

The Weinberg Family Cerebral Palsy Center joined CPRN in 2020 and contributes patient and intervention data to support CPRN studies and collaborative research efforts.

CPRN Clinical Registry

CPRN’s registry includes a clinical component that can be populated through routine care visits. At the Weinberg Family CP Center, patient and intervention data can be added through care visits with our multidisciplinary providers.

CPRN’s approach is designed to reduce manual data entry by capturing key CP information in defined sections of a clinical note, which can then be anonymized and sent to the CPRN data center. This helps improve efficiency and reduces opportunities for error compared with traditional, manually entered databases.

CPRN Community Registry

CPRN also includes a community-powered component, allowing people with CP and caregivers to share lived experience and natural history information directly. The CPRN Community Registry collects data using surveys accessed through the CPRN MyCP web portal.