Building the Foundation for Collaborative Learning and Research for Persons with Spina Bifida

A project to develop goals and measures for improving care for patients with spina bifida and identify high leverage changes that will bring about improvement in the care of patients with spina bifida. In addition, create a first generation registry that could be used to inform both improvement work and clinical research.


Status: Complete

October 2006 to March 2007

  • Who: The project involved dozens of healthcare providers working with persons with spina bifida as well as experts in patient registries and many clinical leaders from national healthcare organizations.
  • Funder: The project was funded by the U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality and in partnership with the Spina Bifida Association of America.
  • Our Role: Developed the foundation tools for an ongoing learning collaborative program among centers caring for persons with spina bifida to continuously improve care for persons affected by this condition.