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clinical nurse specialist, national registry, outcome research, Spina Bifida Clinic



  1. Taha, Asma PhD, RN, CPNP, CNS-BC, CCRN
  2. Ballou, Michelle M. MS, RN, CNS
  3. Lama, Anne E. BSN, RN


Purpose: The purpose of this article was to describe how clinical nurse specialists can be instrumental in getting involved in the process of joining a national disease registry to improve patient outcomes.


Background: Clinical patient data registries provide longitudinal data on developmental outcomes in chronic, lifelong diseases affecting children. Recognition and application of their use have historically allowed for collection of benchmarking data, improved understanding of disease processes and patient outcomes, and improved quality of life.


Description of the Project: A group of advanced practice nurses in a university-based multispecialty clinic, through evidence-based practice, embarked on the process of joining the National Spina Bifida Patient Registry sponsored by the Centers for Disease Control and Prevention.


Outcome: By taking the lead as project managers, this group of advanced practice nurses obtained buy-in from physicians and multispecialty team members of the Spina Bifida Clinic in the university children's hospital where they practice. An institutional review board application was submitted to their university children's hospital internal review board and currently approved.


Conclusion: This project demonstrates how dynamic utilization of core competencies through application of specific knowledge and skill sets supports the advanced practice nurse's instrumental role in actively initiating, promoting, and supporting participation in clinical patient data registries that seek improved patient outcomes at the national level.


Implications: Clinical nurse specialists quantify their role and purpose when connecting their interventions and influence to patient outcomes with utilization of resources, such as a national patient data registry.