Spina Bifida Useful Web Resources

Last updated May 2026

National Institute of Neurological Disorders and Stroke

2026

Provides an overview of spina bifida, including causes, symptoms, diagnosis, treatment options, and current research supported by the NIH.

Centers for Disease Control

2025

Information on spina bifida, including risk factors, prevention (such as folic acid use), prevalence, and outcomes across the lifespan.

Spina Bifida Association

2025

Explains spina bifida from a patien and family centered perspective, with accessible explanations, everyday impacts, care considerations, and links to community resources.

National Library of Medicine

2025

Clinically detailed, evidence-based medical reference written for healthcare professionals, covering pathophysiology, evaluation, management, and prognosis.

American Association of Neurological Surgeons

2024

Focuses on the neurosurgical aspects of spina bifida, including anatomy, surgical treatment options, and long-term neurological considerations.

Spine Bifida Hydrocephalus Information Networking Equality (SHINE)

n.d.

Describes the different types of spina bifida (including occulta, meningocele, and myelomeningocele) in clear, accessible language, with a focus on how each type may affect children and families.

MedlinePlus Medical Encyclopedia

2025

Provides an easy to understand overview of the central nervous system, including the brain and spinal cord, their functions, and common conditions that affect them.

Medscape

2025

An indepth, anatomy focused explanation of the central nervous system,

Centers for Disease Control

2026

Presents national data on spina bifida, including prevalence, trends over time, survival, and health outcomes.

Spina Bifida Association

2025

A supportive, plain language guide designed for expectant and new parents.

Spina Bifida Association

2025

Provides information and resources specifically for families during pregnancy, including prenatal diagnosis, care planning, delivery considerations, and emotional support for navigating next steps

MedlinePlus Medical Encyclopedia

2025

Provides clear, patient friendly explanations of human anatomy, including major body systems, organs, and structures, with diagrams and links to related health topics.

Gillette Children's Health Library

n.d.

Explains the clinical method used to assess muscle strength by grading a persons ability to move against gravity and resistance, commonly used in neurological and rehabilitation evaluations.

Centers for Disease Control

2026

Presents national data on spina bifida, including prevalence, trends over time, survival, and health outcomes.

European Surveillance of Congenital Anomalies (EUROCAT)

n.d.

Europe wide network of population based registries that collect, analyze, and monitor data on congenital anomalies (birth defects), including neural tube defects such as spina bifida.

Spina Bifida Association

2025

Guidelines for the Care of People with Spina Bifida. Use this as a roadmap to help the right care occurs at the right time. Age based guidelines can be found here; expectant parents, children, adolescents and transition, and adults.

Loughborough University

n.d.

Fit for Life: A guide that includes practical, accessible guidance on physical activity, exercise, and overall wellness, emphasizing confidence-building and gradual progression regardless of a persons current fitness level or experience.

Loughborough University

n.d.

Fit for Sport: An advanced educational resource designed for individuals with disabilities who are already physically active and wish to progress toward higher?level or competitive Para sport.

World Abilitysport

n.d.

An international sports federation dedicated to developing, governing, and promoting Para and adaptive sports worldwide.

Special Olympics

n.d.

A global nonprofit organization dedicated to empowering people with intellectual disabilities through sports, health, education, and leadership programs.

Hydrocephalus Association

n.d.

U.S.-based nonprofit organization dedicated to finding a cure for hydrocephalus and improving the lives of individuals and families affected by the condition.

National Institute of Neurological Disorders and Stroke

2026

Provides an overview of hydrocephalus, including causes, symptoms, diagnosis, treatment options, and current research supported by the NIH.

National Institute of Neurological Disorders and Stroke

2026

Provides an overview of Chiari malformation, including causes, symptom, diagnosis, treatment options, and current research supported by the NIH.

International League Against Epilepsy

n.d.

The worlds leading professional association dedicated to improving the lives of people with epilepsy and seizure disorders.

National Institute of Neurological Disorders and Stroke

2026

Provides an overview of syringomyelia, including causes, symptoms, diagnosis, treatment options, and current research supported by the NIH.

National Institute of Neurological Disorders and Stroke

2026

Provides an overview of tethered spinal cord syndrome including causes, symptoms, diagnosis, treatment options, and current research supported by the NIH.

Spina Bifida Association

2025

Lifespan Bowel Management Protocol; an evidence based resource to support the management of bowel incontinence across the lifespan for individuals living with spina bifida and neurogenic bowel. Includes a sample bowel diary in the appendix.

Spina Bifida Association

2026

A list of US Spina Bifida clinics and SBA Clinic Care Partners.

Gillette Children's Health Library

n.d.

Bladder augmentation summary and links to additional information.

World Health Organization

n.d.

Family planning and contraception.

National Cancer Institute

2021

Human Papillomavirus (HPV) Vaccine information.

Spina Bifida Association

2025

Sexual Health and Education Guideline; an evidence?based clinical guideline designed to support healthcare professionals, individuals with spina bifida, and their families in promoting healthy sexuality, sexual well?being, and informed sexual decision?making across the lifespan.

Gillette Children's Conditions & Care

n.d.

What is Gait and Motion Analysis? The page is designed for patients, families, and referring providers and highlights how advanced movement analysis supports accurate diagnosis and individualized treatment planning.

National Pressure Injury Advisory Panel

2025

International Clinical Practice Guideline for the Prevention and Treatment of Pressure Ulcers/Injuries.

Spina Bifida Association

2025

Did You Look? Skin Integrity Bundle; a structured set of educational materials designed to promote daily skin inspection and prevention of skin breakdown in individuals living with spina bifida.

Braden Scale

n.d.

Internationally recognized tool used by healthcare professionals to assess an individuals risk for developing pressure injuries.

Spina Bifida Association

2025

Nutrition, Metabolic Syndrome, and Obesity Guideline; an evidence based, lifespan oriented guideline designed to support healthy nutrition, weight management, and prevention of metabolic complications in individuals living with spina bifida.

Allergy & Asthma Network

n.d.

Latex Allergy; overview and a practical guide to understanding latex allergy. Includes common items that may contain latex and safe alternatives.

Spina Bifida Association

2025

Neuropsychology Guideline; an evidence?based, lifespan?oriented clinical guideline focused on understanding and supporting the cognitive, academic, behavioral, and adaptive functioning of individuals living with spina bifida.

National Highway Traffic Safety Administration

n.d.

Adapted Vehicles; , safety focused information for people with disabilities who are considering modifying a vehicle or purchasing a vehicle with adaptive equipment.

Got Transition

n.d.

Aims to help youth and young adults move from pediatric to adult health care

Individuals with Disabilities Education Act (IDEA)

n.d.

Official, comprehensive reference source for understanding federal special education law in the US.

Americans with Disabilities Act

n.d.

Americans with Disabilites Act (ADA)

CanChild

2025

Family-Centred Service

Patient-Oriented Research Curriculum in Child Health

n.d.

An online learning platform that provides free, interactive education about patient oriented research in child health

Patient-Centered Outcomes Research Institute

n.d.

An independent, nonprofit organization authorized by the U.S. Congress to fund and promote patient?centered comparative clinical effectiveness research (CER).

Canadian Institutes of Health Research

2023

Strategy for Patient-Oriented Research; Canadas national approach to patient oriented research

Gillette Children's

n.d.

Family Engagement in Research