# The Continued Development and Implementation of the Spina Bifida Collaborative Care Network

> **NIH ALLCDC U01** · SPINA BIFIDA ASSOCIATION · 2022 · $665,000

## Abstract

RFA-DD-19-001: Component A
Development and Implementation of the Spina Bifida
Collaborative Care Network
Project Summary
Individuals affected by Spina Bifida (SB) can expect to live full lives both in terms of
quality and duration. The Spina Bifida Association (SBA) aims to provide health care
professionals, individuals with SB, and their families and caregivers the resources
needed to support them to make informed decisions about interventions and practices
that yield the best outcomes in the many areas of health and living affected by SB.
Prior to the initiation of the National Spina Bifida Patient Registry (NSBPR) and the
Spina Bifida Collaborative Care Network (SBCCN), there was limited communication
among SB health care professionals, SB clinics, and SB Chapters in the U.S. The
NSBPR and the SBCCN now connect SB clinics, health care professionals, and SB
chapters throughout the US, so that, through collaboration and the sharing of
information, the quality of life for people with SB is maximized.
Activities in the proposal titled “The Continued Development and Implementation of the
Spina Bifida Collaborative Care Network”, in response to CDC “Research Approaches
to Improve the Care and Outcomes for People Living with Spina Bifida” (RFA-DD-19-
001), will use clinical outcomes data from the NSBPR to identify SB clinic practices and
processes that are associated with the best outcomes for people living with SB; and will
communicate and encourage adoption of these practices and processes by all SB
clinics. Additionally, the SBCCN will actively bridge the gap between SB research and
practice by:
 • enhancing and expanding communication to health care professionals practicing
 in and out of SB clinics to promote the adoption of best practices, such as the
 “Guidelines for the Care of People with SB”;
 • identifying, communicating and supporting the exploration of research
 gaps/priorities by collecting and providing NSBPR researchers with information
 about SB patient and clinician research priorities and research gaps—and
 supporting exploration efforts when gaps are identified; and
 • determining and promoting attributes of NSBPR clinics that are associated with
 the best patient outcomes.
Educational/informational resources for the individual with SB and provider
communities, health care professionals, families, and educators will be developed,
marketed, and provided as new research/information becomes available. Multiple
communication channels will be employed to share all new developments.

## Key facts

- **NIH application ID:** 10442341
- **Project number:** 5U01DD001257-04
- **Recipient organization:** SPINA BIFIDA ASSOCIATION
- **Principal Investigator:** Judy Karen Thibadeau
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2022
- **Award amount:** $665,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10442341

## Citation

> US National Institutes of Health, RePORTER application 10442341, The Continued Development and Implementation of the Spina Bifida Collaborative Care Network (5U01DD001257-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10442341. Licensed CC0.

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