Guidelines for the Care of People with Spina Bifida

The Guidelines were developed to give every healthcare professional—from generalist to specialist—a roadmap to the best evidence‑based and expert care from birth through adulthood.

The Guidelines for the Care of People with Spina Bifida have evolved over more than three decades, driven by the need to support individuals living with the most commonly occurring complex congenital birth defect associated with long‑term survival. The first two editions, published in 1990 and revised in 1995, were built from limited contemporary knowledge and expert opinion, reflecting the best available understanding of the medical and psychosocial challenges faced by people with Spina Bifida.

By the early 2000s, research remained sparse, prompting the 2003 “Evidence‑Based Practice in Spina Bifida” symposium to identify gaps and set priorities for future study. The third edition, released in 2006, incorporated findings from that effort and expanded guidance across the lifespan, though it still relied heavily on expert consensus due to the lack of robust evidence, especially for adults.

The fourth edition marks the most significant advancement. Developed over three years by nearly 100 volunteers, it broadened coverage of adult care needs, added new topics, and adopted a title that centers on respect for people living with Spina Bifida rather than focusing solely on the condition. Where evidence existed, it was included; where it did not, expert working groups used recognized consensus‑building methods to shape recommendations.

The Guidelines are recommendations rather than legal standards of care. Their purpose is to guide clinicians, individuals, and families toward the best available, person‑centered care. The Guidelines continue to evolve and remain grounded in the goal that has shaped every edition: supporting people with Spina Bifida in achieving longer, healthier, and higher‑quality lives.