Spina Bifida Research Leadership and Innovation in Self-Management

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.

For adults living with spina bifida, the evidence base guiding care has long been underdeveloped. Most clinical studies have focused on pediatrics, leaving adult populations underrepresented in research and even in consensus guidelines on the care of people with spina bifida. Few programs across the United States collect systematic outcomes data in adults, and even fewer combine this with innovation in patient self-management tools, strategies, and studies.

The UPMC Adult Spina Bifida Clinic is one of the few comprehensive programs for adults with spina bifida working to address these gaps. By contributing adult data to the National Spina Bifida Patient Registry and developing digital tools to support self-management, the clinic has built a research infrastructure that strengthens its own practice and the broader field.

“Every challenge we encounter in clinic becomes an opportunity to generate knowledge,” says Brad Dicianno, MD, professor of physical medicine and rehabilitation and director of the clinic. “Our responsibility is not only to care for patients, but to build the evidence base that will guide and inform improvements in care for the next generation.”

National Spina Bifida Patient Registry

A central element of the program’s research is its participation in the National Spina Bifida Patient Registry (NSBPR), funded by the U.S. Centers for Disease Control and Prevention. Since joining the registry in 2011, the UPMC Adult Spina Bifida Clinic has enrolled more than 500 patients from the adult clinic. Nationally, the registry tracks more than 12,400 patients at more than 25 sites, creating the largest longitudinal dataset in the field.

“The National Spina Bifida Patient Registry has been our central research platform. It allows providers nationwide to contribute data on outcomes, giving us the scale and scope that no single center could achieve on its own,” says Sara E. Izzo, BA, research coordinator and peer counselor in the UPMC Adult Spina Bifida Clinic.

Izzo manages enrollment, patient interviews, and data collection. Her lived experience of having spina bifida helps her connect with patients in ways that enrich the research registry.

“When I interview patients and enter data, it’s not just about the numbers,” Izzo says. “As someone living with spina bifida, I can connect with patients on a personal level. That trust helps ensure we capture an accurate picture of their lives that is represented in the data that ultimately is used to make care programs better.”

Cheyenne Hennen, BA, a clinical research coordinator in the UPMC Adult Spina Bifida Clinic, supports the clinic’s registry participation alongside Izzo and Dr. Dicianno.

“I work closely with Sara on the NSBPR,” Hennen says. “Together we collect and manage data that allow our clinic to contribute adult outcomes to the national dataset.”

The registry has provided critical insights into complications and mortality risks, among other considerations in the patient population.

“One of the things the registry has taught us is how critical skin care is,” Izzo says. “Sepsis due to skin breakdown is a major contributor to mortality, yet our clinic has maintained comparatively low rates. That shows how data collection can validate what we’re doing well and where we need to focus.”

Beyond medical complications, the registry is expanding into patient-centered outcomes.

“Through the registry, we also administer quality-of-life surveys. Right now, they focus mainly on pain, but we’re looking to expand into measures of independence, financial and social needs, and other areas that patients define as important,” Izzo says.

For Dr. Dicianno, UPMC’s role in contributing adult data is particularly important.

“Most spina bifida centers in the United States are pediatric in nature,” Dr. Dicianno says. “Our contribution of adult outcomes is essential for helping the medical community understand what happens across the lifespan in our patient population – where the gaps in care are and what those translate to in terms of outcomes.”

Digital Self-Management Tool: iMHere

The registry provides data, but also digital health offers tools for action, including iMHere, (Interactive Mobile Health and Rehabilitation), a mobile platform designed to support self-management in complex conditions like spina bifida. iMHere is prescribed through the electronic medical record and tied to clinic follow-up for patients in the UPMC Adult Spina Bifida Clinic.

The iMHere app enables patients to:

• Log bowel and bladder routines, mood, medications, and physical activity.
• Maintain a personal health record.
• Access tailored educational materials.

“For patients with executive function challenges, even missing a day or two of routines related to bowel, bladder, or skin care can have major consequences. That’s why tools like iMHere are important. They give patients the reminders and structure they need to more effectively manage their health,” Izzo says.

Peer staff like Izzo and Hennen also are positioned to build engagement with patients because of their lived experience as adults with spina bifida.

“Because we also live with spina bifida, we can explain how the app fits into daily life,” Hennen says. “It’s not abstract for us. We’ve used these strategies ourselves, and because of that, we can translate their benefits for patients and help each individual where they need it most.”

Clinical trials have demonstrated the feasibility and impact of iMHere, showing reductions in preventable complications and increased adherence. Its design reflects an iterative cycle of feedback from patients and providers leading to continuous refinement.

Challenges and Ongoing Optimization

Like all digital health interventions, sustaining engagement among patients with the iMHere app remains challenging. Many patients with spina bifida experience executive dysfunction, making it difficult to use digital tools consistently.

“We know reminders alone are not enough for some patients,” Dr. Dicianno says. “That’s why we’re exploring more advanced approaches.”

The team is applying implementation science frameworks to understand barriers and design more effective engagement strategies. At the same time, they are piloting artificial intelligence (AI) tools to tailor the app’s content.

“Artificial intelligence gives us the ability to personalize reminders, adapt educational material, and predict when someone might need extra support,” Dr. Dicianno says. “The goal is to move from a one-size-fits-all modality to one of precision self-management.”

UPMC’s Broader National Leadership in Spina Bifida Care and Research

Research leadership in the clinic extends beyond the registry and app development. Dr. Dicianno has played a central role in developing national care guidelines for adults with spina bifida through the Spina Bifida Association.

“By combining registry data with clinical expertise, we can create guidelines that are evidence-based and practical,” Dr. Dicianno says.

Through its dual role in contributing data and building digital tools, the UPMC Adult Spina Bifida Clinic is helping to transform and evolve how adult spina bifida care is understood and delivered.