Header image

Instructional Course: Spinal cord injury neurogenic bowel and bladder measures, advances and new recommendations.

Track 2
Wednesday, September 2, 2020
3:00 PM - 4:30 PM
Auditorium - Track 2


Agenda Item Image
Dr Tracey Wheeler
Program Officer
Craig H. Neilsen Foundation

Spinal Cord Injury Neurogenic Bowel and Bladder measures, advances and new recommendations.


Denise G. Tate, PhD, Department of PMR, University of Michigan, USA
Gianna Rodriguez, MD, Department of PMR, University of Michigan, USA
Marcel Post, De Hoogstraat Rehabilitation, Utrecht, and University Medical Center Groningen, Groningen, the Netherlands
(moderator) Tracey Wheeler, PhD, Craig H. Neilsen Foundation, Encino California, USA

Introductions / objective (5 min) Tracey Wheeler

A synopsis of the course will be provided:
This course will focus on recommendations for SCI patient self-report and clinical evaluation/measurement tools used in the assessment of neurogenic bowel & bladder. A multi-year effort was undertaken by community experts to evaluate neurogenic bowel and bladder measurement tools. Measures were selected for evaluation based on previous use in research studies as well as clinical diagnostics and assessment in SCI. Evaluations focused on the reliability, validity, strengths, deficiencies and ease of use. Clinical assessments and diagnostic tools, self-report measures (SRMs) and data sets were evaluated based on their psychometric properties. Criteria for evaluation of clinical measurement tools were modeled after the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) guidelines.
Over 25 experts in the area of SCI measurement participated in this process and resulting set of recommendations.
A discussion of how these measures can be used to test specific hypotheses in SCI animal models and human studies, including what changes have been recommended to further advance translational research in this area will conclude the course.

Review of Taskforce: Patient self-reported outcome measures and international SCI datasets for neurogenic bowel & bladder. (20 min) Marcel Post

A review of the taskforce efforts including meetings, measure selection, review criteria and participants will be provided.

Clinical Urinary & Gastroenterological Tract Assessments and Recommendations for Use in SCI/D. (20 min) Gianna Rodriguez

A review of the clinical assessments including measure selection and findings will be provided along with clinical experience.

Recommendations for Use of Measures and Integration with the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs). (20 min) Denise G. Tate
An update on the taskforce efforts to communicate outcomes along with and update on the recommendations provided to NIH for CDE inclusion will be provided.

Discussion (15 - 20 min) Facilitated discussion by Tracey Wheeler


Tracey Wheeler, Ph.D., joined the Craig H. Neilsen Foundation to lead its largest spinal cord injury (SCI) research portfolio. The Neilsen Foundation is the world’s largest private funding organization dedicated to SCI and the scope of this portfolio is broad, encompassing mechanistic, preclinical modeling, translational and/or clinical research to improve the understanding of traumatic SCI and develop new approaches to alleviate the dysfunction and complications that follow. Tracey has over 15 years of experience in scientific program development, research evaluation and program management. Prior to joining the Foundation, she worked as a scientific consultant and staff advisor at Defense Advanced Research Projects Agency (DARPA) in the areas of biomedical and biotechnology research with a strong emphasis on neural interface technologies. She has numerous publications on topics ranging from emerging brain-computer-interface technologies to the long-term effects of stimulant exposure on adolescent brain development.