Spina Bifida Healthcare Navigator Program
Running, not enrolling · Not applicable
Conditions studied: Spina Bifida
In brief
Many adults with spina bifida experience difficulties managing their health-such as coordinating care across multiple providers, keeping up with medications, and navigating insurance systems. These tasks require strong thinking skills like planning, organizing, and problem-solving, which are often called "executive functions." Many adults with spina bifida have challenges with these skills due to differences in brain development associated with the condition. When a person's thinking abilities do not match the demands placed on them by their healthcare and daily routines, health problems often follow. Despite this, very few programs exist to help adults with spina bifida address this gap. This study tests a new program called ALIGN (Navigating Life with Spina Bifida), developed at the UPMC Adult Spina Bifida Clinic. ALIGN was co-designed with a healthcare provider who is also an adult living with spina bifida. The program helps participants improve the fit between their abilities and their environment through two approaches: building personal skills and strategies, and arranging supports and routines to make demands more manageable. ALIGN includes six virtual group sessions and one individual session with a clinician. Participants will be adults (age 18 or older) with spina bifida. They will complete questionnaires before and after the program measuring confidence in managing health, mood, and ability to participate in daily activities. A separate group of participants who do not take part in ALIGN will complete the same questionnaires for comparison. The main goals are to determine whether ALIGN is practical to deliver, acceptable to participants, and associated with early signs of benefit.
Key facts
- Study ID
- NCT07531862
- Run by
- University of Pittsburgh
- People needed
- 24
- Starts
- 2026-04-15
- Expected to finish
- 2026-09-01
- Last updated by the study team
- 2026-06-04
Who can join
Age: 18 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Adults (18 years or older) diagnosed with spina bifida (SB), including any type (e.g., myelomeningocele, meningocele, lipomyelomeningocele).
- Individuals who are able to participate in educational and interactive sessions (in-person at UPMC Mercy or remotely via secure teleconferencing).
- English fluency
You may not qualify if…
- Under 18 years of age
- Non-English fluency
Where it is running
- University of Pittsburgh/UPMC — Pittsburgh, Pennsylvania, United States
Full record on ClinicalTrials.gov
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