Bowel Continence Across the Lifespan in People With Spina Bifida (NCT07390318)
🩺 Plain-English Summary (8th-Grade Level)
The goal of this observational study is to learn how different enema programs affect bowel control in children and adults with spina bifida. An enema program involves putting liquid into the large intestine (colon) to help someone poop. The main questions it aims to answer are: 1. How well do different enema programs prevent bowel accidents? 2. How do these enema programs affect independence, bowel symptoms, and quality of life? Researchers will compare two types of enema programs to see which works better and is easier for participants to manage. Participants starting a new enema program will answer online survey questions at 3 different timepoints over the course of 1 year.
Who can join: To join this study, participants generally need to meet the listed inclusion criteria (4 items) and avoid the listed exclusions (1 items).
Location: University of Alabama at Birmingham — Birmingham, Alabama
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistCheck every box below. If you can check all of them, you may meet the study's basic screening requirements (final eligibility is confirmed by the site team).
Usually NOT eligible if any of the following apply:
- Exclusion Criteria: \- Other types of spinal dysraphism (e.g., lipomyelomeningocele, fatty filum)
🔍 Extracted verbatim from the official NIH eligibility criteria. Always confirm with the study coordinator.
📍 All Participating Trial Locations (24 Sites)
- University of Alabama at Birmingham — Birmingham, Alabama
- Children's of Alabama — Birmingham, Alabama
- Phoenix Children's Hospital — Phoenix, Arizona
- Children's Hospital of Los Angeles — Los Angeles, California
- University of California San Francisco — San Francisco, California
- Children's Hospital of Colorado — Denver, Colorado
- Children's National Hospital — Washington D.C., District of Columbia
- Ann & Robert H. Lurie Children's Hospital of Chicago — Chicago, Illinois
- Northwestern University — Chicago, Illinois
- Riley Children's Hospital — Indianapolis, Indiana
- Boston Children's Hospital — Boston, Massachusetts
- University of Michigan — Ann Arbor, Michigan
- Duke University Medical Center — Durham, North Carolina
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio
- Cleveland Clinic — Cleveland, Ohio
- Nationwide Children's Hospital — Columbus, Ohio
- Children's Hospital of Philadelphia — Philadelphia, Pennsylvania
- University of Pittsburgh Medical Center — Pittsburgh, Pennsylvania
- Monroe Carell Jr. Children's Hospital at Vanderbilt — Nashville, Tennessee
- Scottish Rite for Children — Dallas, Texas
- Texas Children's Hospital — Houston, Texas
- Primary Children's Hospital — Salt Lake City, Utah
- Seattle Children's Hospital — Seattle, Washington
- University of Washington — Seattle, Washington
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.