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What Have We Learned from the NBRG-SCI Registry?

By: Blayne Welk, MD, MSc, FRCSC, Jeremy Myers, MD | Posted on: 29 Jan 2021

Research must be viewed as a long-term investment. It requires a significant upfront outlay of time and energy that is driven solely by the hope that the final result will be a worthwhile contribution. However, the funding, execution and publication of medical research is becoming more challenging. Advanced degrees are now common among new physicians, grant competitions often have funding rates of 10% or less, and publication in a respected speciality journal is harder and harder to achieve.

The formation of research groups is one way to address some of the challenges of academic research. These groups combine the talents, knowledge, patient populations and “time” of several researchers (usually from different centers) into a common pool to accomplish a research goal that would be difficult for an individual researcher to take on. In recent years several research networks have arisen from functional urology collaborations, such as SURN, LURN, TURNS and MAPP. In neurourology, the Neurogenic Bladder Research Group (NBRG,, see figure) was established in 2015 as a result of a large collaborative Patient Centered Outcomes Research Institute (PCORI) grant, which sought to better understand bladder-related quality of life (QOL) after spinal cord injury (SCI).

This study collected detailed demographics and numerous validated QOL questionnaires from almost 1,500 people in North America who were living with SCI. This project was made possible by leveraging the large SCI patient populations of 3 primary centers (University of Utah, Minnesota and Michigan). In the seminal paper from this study, people with SCI who underwent an operative urinary diversion or reconstruction had significantly fewer bladder symptoms (primarily due to reduced incontinence) and an improved bladder management QOL compared to those who were using intermittent catheters (IC) through their native urethra. 1 This finding helps to validate the operative complications that patients take on when they select reconstruction or diversion and was a primary hypothesis evaluated with this project.

Figure 1. Map showing centers with active NBRG members.

The dataset from this study became known as the NBRG-SCI registry, and it was used to study several research questions relevant to SCI. Maintaining people on IC after SCI is a common goal of urologists. However, we know that people tend to switch to other types of bladder management over time. Of the 176 patients in the registry who had used but discontinued IC, the common reasons can be nicely summarised as the four “I's” of inconvenience, incontinence, infections and independence. 2 This reinforces to physicians the importance of actively managing factors we can influence such as urinary infections and incontinence in people using IC after SCI in order to maximize bladder management satisfaction. When looking at what predicts dissatisfaction with IC, female gender, frequent infections and bowel dysfunction were significantly correlated with dissatisfaction. However, importantly level of injury, fine motor hand function, and caregiver dependence for IC did not. 3 It is important to note that this is within a self-selected population that had chosen IC and in most cases had persisted with it for several years after their SCI. The NBRG-SCI registry data also demonstrated that fine motor skill has the greatest association with IC as the primary bladder management after a median of 11 years from SCI. 4 Another study showed that after SCI people with public insurance status were less likely to use IC and less likely to take bladder medication. Despite this, QOL and bladder symptoms were similar between those with public or private health care. 5

Urinary tract infections (UTIs) are a major source of morbidity for people after SCI and a frustrating problem for urologists to manage. While culture proven symptomatic infections are the standard definition that we try to promote, in practice many patients are bothered by symptoms suggestive of a low grade urinary infection, and this is difficult to differentiate from asymptomatic bacteriuria. Patients often still consider this a “UTI” and in most cases receive treatment for it. In the NBRG-SCI registry self-reported urinary infections were highest among people who use indwelling catheters. 6 However, it is surprising that the magnitude of risk of these self-reported UTIs (with patients with SCI who void as the reference category) is not all that different between IC users (OR 3.42, 95% CI 2.25–5.18) compared to indwelling catheter users (OR 4.3, 95% CI 2.59–6.70). In addition to the medical risks of urinary infections, they are an independent and “dose dependent” risk factor that has a negative impact on a QOL. 7 Among the 1,260 patients in the registry who had 1 year followup there was a 14% rate of urological hospitalization, and of these 88% were due to urinary infections. 8 UTIs are an obvious problem in this patient population, and this research underscores the importance of addressing this problem in future studies.

The NBRG-SCI registry provided a contemporary, detailed evaluation of a large group of people living with SCI. Strengths of the data included geographic diversity, a large number of patients, detailed patient characteristics and validated outcome measures for people with SCI (a common limitation of previous studies). This registry was the required motivation to formalize and grow the NBRG into a research collaborative that is committed to pursuing collaborative, meaningful research questions in neurourology.

  1. Myers JB, Lenherr SM, Stoffel JT et al: Patient reported bladder related symptoms and quality of life after spinal cord injury with different bladder management strategies. J Urol 2019; 202: 574.
  2. Patel DP, Herrick JS, Stoffel JT et al: Reasons for cessation of clean intermittent catheterization after spinal cord injury: results from the Neurogenic Bladder Research Group spinal cord injury registry. Neurourol Urodyn 2020; 39: 211.
  3. Crescenze IM, Myers JB, Lenherr SM et al: Predictors of low urinary quality of life in spinal cord injury patients on clean intermittent catheterization. Neurourol Urodyn 2019; 38: 1332.
  4. Elliott CS, Stoffel JT, Myers JB et al: Validation of upper extremity motor function as a key predictor of bladder management after spinal cord injury. Arch Phys Med Rehab 2019; 100: 1939.
  5. Rude T, Moghalu O, Stoffel JT et al: The role of health insurance in patient reported satisfaction with bladder management in neurogenic lower urinary tract dysfunction due to spinal cord injury. J Urol 2020; doi:10.1097/ju.0000000000001346.
  6. Roth JD, Pariser JJ, Stoffel JT et al: Patient subjective assessment of urinary tract infection frequency and severity is associated with bladder management method in spinal cord injury. Spinal Cord 2019; 39: 493.
  7. Theisen KM, Mann R, Roth JD et al: Frequency of patient-reported UTIs is associated with poor quality of life after spinal cord injury: a prospective observational study. Spinal Cord 2020; doi:10.1038/s41393-020-0481-z.
  8. Crescenze IM, Lenherr SM, Myers JB et al: Self-reported urologic hospitalizations or emergency room visits in a contemporary spinal cord injury cohort. J Urol 2020; doi:10.1097/ju.0000000000001386.