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

Status: Complete

WHAT: 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.

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.

WHEN: October 2006 to March 2007

FUNDER: The project was funded by the US Department of Health and Human Services, Agency for Healthcare Research and Quality and in partnership with the Spina Bifida Association of America.

NICHQ'S 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.

What is Spina Bifida?

Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. The backbone that protects the spinal cord does not form and close as it should. This often results in damage to the spinal cord and nerves. Source: CDCExternal Link

Doctor cradling a small baby