# Clinical Core

> **NIH NIH P01** · WASHINGTON UNIVERSITY · 2024 · $299,736

## Abstract

PROJECT SUMMARY
Clinical Core: Abstract
The Clinical Core (CC) supports the Park-Reeves Chiari & Syringomyelia Center (PRCSC) by leading participant
screening, enrollment, and consenting processes as well as the acquisition of clinical data, neurobehavioral
assessments (NIH Toolbox), and patient-reported outcome measures (PROM), including health-related quality
of life (hrQOL) instruments. This will include patients with CM recruited for participation through the clinical
practices at Washington University/St. Louis Children’s Hospital/Barnes-Jewish Hospital but also through the
multicenter Park-Reeves Chiari Genetics Group.
The CC will maintain the 5 key datasets to support the aims and scientific initiatives all four proposed P01
Projects: 1) PRCSC multicenter registry; 2) PRCSC’s 42-center PCORI-supported randomized clinical trial
Posterior Fossa Decompression With or Without Duraplasty for Chiari Type I Malformation with Syringomyelia
(the PFD/D Trial); 3) Chiari Comorbidites database; 4) Park-Reeves Chiari Genetics database; and 5) P01
Prospective Cohort 1 (aged 9-18 years) and Cohort 2 (aged ≥19 years). All data will be coded, anonymized,
uploaded, and stored using existing Standing Operating Procedures. Through these and related rigorous
processes, the CC will support the PRCSC’s overarching mission to redefine CM using leading-edge, high quality
genetic, radiological, and clinical data, and to determine the effect of CM on brain development, neurological
outcomes, and PROM.
The functions of the CC are to:
1. Recruit and maintain the study cohorts for all aspects of PRCSC.
2. Coordinate all clinical follow-up, neurobehavioral assessments, and PROM across all Projects and Cores.
3. Provide clinical data, developmental assessments, and PROM to all PRCSC Cores and Projects to
 facilitate their scientific initiatives.
4. Conduct long-term, longitudinal clinical follow-up with neurobehavioral assessment, and PROM and
 hrQOL scoring to determine disease natural history and treatment durability in CM and SM.
5. Manage the workflow of all PRCSC-wide clinical databases, including the design of forms, data entry,
 quality control, and the distribution of analyzed clinical data sets to investigators, Projects, and Cores.
6. Engage the CM community to contribute to PRCSC studies and support its research priorities.
7. Support the PRCSC mission by nurturing early-stage investigators so that they develop into independent,
 effective CM scientists.

## Key facts

- **NIH application ID:** 10876263
- **Project number:** 5P01NS131131-02
- **Recipient organization:** WASHINGTON UNIVERSITY
- **Principal Investigator:** David Delmar Limbrick
- **Activity code:** P01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $299,736
- **Award type:** 5
- **Project period:** 2023-07-01 → 2028-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10876263

## Citation

> US National Institutes of Health, RePORTER application 10876263, Clinical Core (5P01NS131131-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10876263. Licensed CC0.

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