Centers for Disease Control and Prevention National Spina Bifida Patient Registry

PROJECT SUMMARY
Delivery of holistic care to persons with spina bifida/myelomeningocele remains a complex challenge to
clinicians in the field, researchers in academic settings, and public health agencies charged with assuring best
practice standards. The National Spina Bifida Patient Registry is uniquely positioned to directly support these
complex challenges. The leadership, site participants, and individuals who comprise the entirety of the Registry
are experts in the field; the structure is well defined, rigorous, yet adequately flexible for ready change when
shifts are needed for quality purposes; and there are continuing outcome products (publications, reports, etc.)
that reflect the value of the enterprise. The Spina Bifida Program at Texas Scottish Rite Hospital for Children
(TSRH) in Dallas, TX, an active participant in the Registry, continues to expand both in numbers of families
served and in the broad spectrum of services and programs available for pediatric patients. For over 25 years,
there have been – at any time along the way – about 850 to 900 families actively engaged in the Spina Bifida
Program Clinics at TSRH. While the majority of these patients come from about a 100-mile radius from the
hospital, the Program serves children throughout Texas: El Paso to Dallas; Lubbock to Austin. The diversity of
the population is reflective of that in the North Texas region: a slight majority of non-Hispanic white, a near-
majority with Hispanic background, and about 10% Asian or Black background. A slight majority carry
commercial insurance; a near majority have Medicaid; and a minority carry both. The parents represent a wide
socio-economic and educational diversity. The diverse demographic population allows for large, balanced
cohorts for both clinical research and reports. Because of the historically unique system of financial support to
families by the Hospital and the nature of the services provided, the longitudinal follow-up of patients from birth
to adulthood remains remarkably high. Willingness to participate in clinical studies remains high as well. This
has allowed the Program to conduct longitudinal research in addition to robust cross-sectional studies. To this
point, the Hospital has been able to support to some degree the activities specific to the demands of the Registry.
The TSRH Spina Bifida Program can better maximize its potential as a Registry participant, expand the activities
of the Program, and advance new initiatives with funding support from the Registry. We are presently involved
in two specific initiatives for outcomes studies; funding support should allow greater time and focus of our
present research coordinator for added research projects. Through this project we propose the following aims:
1) Continue to collect longitudinal data on individuals with spina bifida in order to identify variation among the
NSBPR clinics, 2) Participate in and implement data quality strategies in order to ensure reliability across clinics,
and 3) Collaborate with other sites to develop research projects addressing scientific gaps in the spina bifida
population.

Grant Number: 6U01DD001262-05M002
NIH Institute/Center: ALLCDC
Principal Investigator: Richard Adams