In 2015 a group of urologists with a special interest in neurogenic lower urinary tract dysfunction (NLUTD) formed the Neurogenic Bladder Research Group (NBRG, “N-bridge,” www.nbrg.org). One of the most important concepts that we sought to promote was that of “bridging” the gaps in NLUTD clinical care and the patient experience.

With that goal in mind, our stated mission is to “address gaps in knowledge in the treatment of NLUTD and provide a platform for high-quality patient-centered prospective studies.” We began with 4 centers and during the last 6 years have expanded to include a total of 10 centers across North America. Having now developed a rich network of urologists, we have diversified to include a physical medicine and rehabilitation provider and expect other future multidisciplinary members. Our group is fully committed to all aspects of our mission including sharing of ideas, collection of data, submission of grants and educational outreach.

Figure. The Neurogenic Bladder Research Group (NBRG).

One of the main reasons that we formed NBRG is to address limitations in the study of NLUTD to date. There was a lack of prospective, well-designed studies in NLUTD. In the literature, retrospective, single-center studies predominate. These studies often are underpowered, report patient outcomes over large timespans, include surgical techniques that may not be reproducible by others and focus on surgeon-defined outcomes. As a result, these investigations may be prone to bias and underreporting of adverse effects on quality of life. NBRG was also formed with the aim of establishing a framework to evaluate patient-reported outcomes, which because of the heterogeneity of NLUTD patient populations requires sampling of a large diverse population.

Using the conceptual framework of another urology research group who focused on another subspecialty of urology with a paucity of robust research (The Trauma and Urologic Reconstruction Network of Surgeons [TURNS]), we established the infrastructure for NBRG. The administrative backbone was formed by data use agreements and a centralized database on the Research Electronic Data Capture (REDCap) platform. We also established a process for centralized institutional review board approval for certain studies to expedite protocol changes and reduce discrepancies between study sites. Finally, all NBRG sites have adequate support from their participating institution. Data entry is time consuming, as is tracking patient compliance with followup and longitudinal data collection. High volume centers have hired research assistants to help with the administrative burden needed for success.

Funding for large research groups can take years to put into place. We were fortunate with a funded Patient-Centered Outcomes Research Institute (PCORI; www.pcori.org) grant in 2016 to assess patient-reported quality of life related to neurogenic bladder management strategy after spinal cord injury (SCI).¹ As we were a new research group without established protocols, we were readily able to adopt PCORI research methods with patient stakeholders guiding our outcome measure choices and engagement methods compared to standard study design. Embracing this type of study design opened our eyes to the patient-centered issues surrounding bladder management after SCI, and we enrolled more than 1,470 SCI participants from across the country.² These findings are summarized in a recent AUANews article (January 2021).

Our second grant support was attained from the Department of Defense as a randomized clinical trial assessing the impact of early sacral neuromodulation after SCI (www.clinicaltrials.gov, #NCT03083366).³ This study has tested our ability to enroll patients who are willing to participate in the protocol procedures during such a delicate time transitioning to early life after SCI. We hope that our future randomized clinical trials are informed by the challenges of this study and expectations for neuromodulation.

While the above 2 studies focus on SCI, NBRG is overall interested in all populations with NLUTD. We have submitted many grants in the last 6 years on spina bifida, multiple sclerosis, recurrent urinary tract infection in NLUTD and catheter design. Our ongoing studies include several prospective multicenter cohort data registries, patient decision aid development and evaluation of NLUTD in large administrative data sets.

To coordinate all of our projects, we have quarterly virtual meetings and in-person research meetings twice per year. One in-person research meeting is held during the meeting of the Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction (SUFU), and another standalone educational meeting is held at one of our participating institutions. Partly as a “visiting professorship” type meeting, our agenda includes educational content and visiting speakers for the regional faculty, residents, fellows, community urologists and multidisciplinary health care providers. We have used these meetings to also host patient stakeholder and research meetings. Smaller committees within NBRG are focused on research proposals, paper development and education.

Finally, while we aim to shape the body of literature regarding NLUTD, we can only truly help improve clinical practice with educational outreach. NRBG members collaborate for urology-focused educational meetings regionally, nationally and internationally, but perhaps more importantly, we present talks at nonurology meetings to engage with our multidisciplinary colleagues. Gynecologists, family practice providers, physical medicine and rehabilitation, advance practice providers among others care for patients with NLUTD, and we need to continue to solicit concerns from them and share our research findings to bring about meaningful shifts in the caliber of care.