Spina Bifida clinic standards are not well described or standardized. While multi-disciplinary clinics are considered the standard of care for children with Spina Bifida, evidence to support this model in adults is lacking. Good, seamless health care delivery is important for people with Spina Bifida;however, current systems of care designed to meet the needs of children with Spina Bifida end when a child becomes an adult. Finding good care for adults with Spina Bifida is difficult because of the number of specialists needed, the limited number of practitioners serving this growing population, systems of care that is unprepared to deal with their needs, their growing chronic adult needs, and the lack of knowledge about them. This group is facing a precarious future unless a collaborative approach is initiated to identify their needs and create a health care system that offers uniform, adequate multi-disciplinary care. The creation of the Clinical Care Monitoring and Tracking (CCMT) infrastructure is about looking for problems and needs and about assessing and harnessing the strengths and resources that promote better health and well-being in the Spina Bifida community. Research efforts into the Spina Bifida clinic network resulted in a National Spina Bifida Patient Registry (NSBPR), the compilation of the clinics list, a clinic classification schem, and the creation of the World Congress on Spina Bifida Care and Research. The Spina Bifida Association (SBA) is currently leading the Spina Bifida Collaborative Care Network (SBCCN) in developing a strategic plan to close the health care gaps that have been outlined. The goals of the SBCCN are to identify the needs of people living with Spina Bifida, develop and implement approaches to connect and communicate with adults living with Spina Bifida, address health care needs as well as gaps in care, improve the availability of information on health and community resources, identify and promote research priorities for the NSBPR, develop a quality-based Spina Bifida clinical structure using the (2008) classification scheme, describe and disseminate the list of Spina Bifida care sites that meet the quality-based clinical structure, and develop, implement, and disseminate a comprehensive evaluation plan that measures the effectiveness of the activities of this funding announcement. Expected Outcomes are creation of a public health infrastructure that monitors, tracks, and evaluates Spina Bifida care across the lifespan, development of health outcomes for people with Spina Bifida, and the improvement of a high performing Spina Bifida clinic structure.

Public Health Relevance

The SBCCN could get people with Spina Bifida, their families, Spina Bifida clinics, other health care providers who treat people with Spina Bifida, agencies that provide programs and services to people with Spina Bifida, and researchers to work together to create and use better ways to manage health and care of people with Spina Bifida.

Agency
National Institute of Health (NIH)
Type
Research Project--Cooperative Agreements (U01)
Project #
1U01DD001077-01
Application #
8821155
Study Section
Special Emphasis Panel (ZDD1)
Project Start
Project End
Budget Start
Budget End
Support Year
1
Fiscal Year
2014
Total Cost
Indirect Cost
Name
Spina Bifida Association
Department
Type
DUNS #
City
Washington
State
DC
Country
United States
Zip Code
20007