Spina Bifida Clinical Trials 2022

Browse 19 Spina Bifida Medical Studies Across 23 Cities
32 Spina Bifida Clinics

Condition

Location

Distance

Age

Clinical Trials Spina Bifida Clinical Trials 2022

Reviewed by Michael Gill, B. Sc.

Phase-Based Progress Estimates

Robotic Training Periodfor Brain Injuries

Calgary, Canada

A common problem among children with nervous system disorders is difficulty walking on their own. This has impacts beyond mobility including short and long-term health conditions associated with physical inactivity and different developmental experiences as a result of the mobility impairments. A robotic trainer can both provide rehabilitation and be an assistive device to help compensate for difficulties. Figuring out how to prescribe it is critical to improve daily life for children with significant disabilities. Preliminary use of robotic trainers have shown many benefits, such as better head control and improved independence in transfers, which greatly increases ability to live independently. Additionally, vital functions that are frequently impaired in those with less physical activity, such as sleep and bowel habits, seem to improve. Finally, these children enjoy using them. This project aims to determine who is most likely to benefit from training with a robotic trainer and investigate key details about the dose of training that is needed. Families that are already using or hope to use robotic training need this data to help improve their access to the intervention. Clinicians need this systematic approach to building evidence to ensure a future multi-centre randomized control trial is well designed. This study is needed to help improve the lives of those who live with significant disabilities. The objective is to evaluate the feasibility and impacts of delivering robotic gait training at home. Integral in this study is capturing the user perspectives. This will both provide preliminary evidence-based advice to potential users, their families, and clinicians as well as provide key metrics to design a definitive multi-centre randomized control trial. The investigators will provide robotic gait trainers, specifically Trexo robotic gait trainers, to participants and their families to use in their home communities for 12 weeks to evaluate the feasibility and impacts of intensive robotic gait training in people who cannot walk independently. Assessments will be completed throughout the duration of study, including before, during, and after the training intervention, with the goal of evaluating a wide range of feasibility considerations and impacts from robotic training.

Phase-Based Progress Estimates

Manual Wheelchair Skills Trainingfor Cerebral Palsy

Grand Rapids, MI

Manual wheelchairs (MWCs) are widely used by children with physical disabilities, yet many of these children are unable to use their wheelchair independently. Instead, they depend on others to push them. This dependency results in limited opportunities to decide what they want to do and where they want to go, leading to learned helplessness, social isolation, decreased participation, and restricted involvement in physical activities. Furthermore, unsafe MWC use increases the risk of injury, as highlighted by the 44,300 children treated each year in emergency departments for MWC-related injuries. While independent MWC mobility can positively influence quality of life, MWC skills training must also be provided to promote safe, independent MWC use. The effectiveness of MWC training programs for adults is well established, yet the current standard-of-care does not include MWC skills training for children and research regarding the efficacy of pediatric MWC skills training programs is limited. Skills on Wheels seeks to address these gaps and provide pilot data for a future large-scale, multi-site research project involving a randomized controlled trial. Aim 1 is to explore the influence of Skills on Wheels on children's MWC skills and confidence in their MWC use. Aim 2 is to investigate the influence of Skills on Wheels on children's psychosocial skills, social participation, and adaptive behavior.

Phase-Based Progress Estimates

Agilikfor Spinal Cord Injuries

Vancouver, Canada

Crouch gait/walking, characterized by an 'over-flexed' knee when the leg is supporting body weight, is common in children with diagnoses of cerebral palsy, spina bifida and other incomplete spinal cord injuries. The "Agilik" is a leg exoskeleton device that aims to improve how children with crouch gait walk. In this study the investigators will quantify the improvement that the Agilik facilitates in children with crouch gait in two ways: 1) the difference the Agilik makes when the participants start using it, and 2) any 'training effects' that can be seen in barefoot walking after six sessions of training with the Agilik.

Phase-Based Progress Estimates

Surgeryfor Tethered Cord Syndrome

The investigators hypothesize that surgical release of the filum terminale (strand of fibrous tissue at the end of the spinal cord) is a more efficacious treatment option for symptomatic relief than medical management in subjects with Occult Tethered Cord Syndrome (OTCS) and that the risks do not outweigh the benefit profile.

Phase-Based Progress Estimates

Power Wheelchair Standing Devicefor Cerebral Palsy

Grand Rapids, MI

This study is evaluating whether a powered wheelchair standing device is feasible for children with neurodevelopmental conditions.

Phase-Based Progress Estimates

In Utero Endoscopic Correction Of Myelomeningocele IDE - Laparotomy/Uterine Exteriorization Techniquefor Acrania

This trial will study two ways to fix spina bifida in fetuses. One is done by going through the skin and the other is by opening the belly and taking the uterus out.

Phase-Based Progress Estimates

Engagement In A 8-week Community-based Activity Programfor Cerebral Palsy

Montreal, Canada

Waitlist Available

This trial is examining whether an 8-week self-chosen community-based activity can lead to a significant improvement in three key body functions for youth with physical disabilities.

Waitlist Available

Phase-Based Progress Estimates

NEOX Cord 1K Applied Fetoscopicallyfor Myelomeningocele

This trial will use NEOX Cord 1K®, which are cryopreserved human umbilical cord allografts, to cover spina bifida defects in order to decrease the rates of postnatal morbidities.

Phase-Based Progress Estimates

Minimally Invasive Fetoscopic Repair Of MMCfor Acrania

Waitlist Available

This trial is testing a new, less invasive way to fix spina bifida in pregnancy. They want to see if it's just as effective as the current method, but with less risk to the mother.

Waitlist Available

Phase-Based Progress Estimates

Fetoscopyfor Acrania

Los Angeles, CA

This trial will test two different ways to operate on fetuses with myelomeningocele (a birth defect where the spinal cord doesn't form properly). One approach goes through the mother's skin (percutaneous), and the other goes through the mother's belly (laparotomy/uterine exteriorization).

Phase-Based Progress Estimates

E-health Applicationfor Aura

Edmonton, Canada

Waitlist Available

This trial is testing whether the MyREADY Transition[TM] BBD App is helpful for brain-based disabilities, compared to not using it. Participants will either use the App or not, as usual care continues. The study team wants to see if the App helps youth be more knowledgeable about their own health.

Waitlist Available

Phase-Based Progress Estimates

EM2Mfor Spina Bifida

This trial is testing the effects of an innovative exercise program, movement-2-music (M2M), on health and fitness outcomes in adults with physical/mobility disabilities. One hundred and eight participants will be recruited and randomly enrolled into one of two groups: M2M or waitlist control. The primary aim of this study is to determine the effects of the 12-week M2M program on health and fitness in participants with physical/mobility disabilities. The study will also compare the observed effects of the program to a previous M2M study, and test whether adherence (attendance to the 12-week program) affects the

Phase-Based Progress Estimates

Fetoscopic Surgical Repairfor Acrania

Waitlist Available

This trial will compare two techniques for repairing a birth defect called myelomeningocele. One technique uses a patch and the other does not. The hypothesis is that the technique with the patch will result in a thicker repair and less chance of the repair coming apart.

Waitlist Available

Phase-Based Progress Estimates

Solution-Focused Coaching In Pediatric Rehabilitationfor Health Behaviors

Toronto, Canada

Waitlist Available

This trial will explore the feasibility and acceptability of coaching children with physical disabilities to improve their physical activity and healthy dietary habits over a 12 month period.

Waitlist Available

Phase-Based Progress Estimates

Aim 2for Spina Bifida

Indianapolis, IN

This trial is testing a new tool to help spina bifida patients and their urologists work together to identify goals for treating urinary and fecal incontinence. The tool will help patients communicate their symptoms and what they hope to achieve, so that the most appropriate treatment can be determined.

Phase-Based Progress Estimates

Fetoscopyfor Acrania

This trial will compare the outcomes of fetoscopic repair of fetal spina bifida to the outcomes of open repair of fetal spina bifida.

Phase-Based Progress Estimates

MHealthfor Spina Bifida

This trial will compare the outcomes of people with chronic health conditions who use a mobile health system to those who receive standard care.

Phase-Based Progress Estimates

Fetoscopyfor Acrania

Waitlist Available

This trial will help researchers understand if a new, minimally invasive technique for repairing fetal MMC is feasible and as effective as traditional surgery, but with less risks for mother and baby.

Waitlist Available

Phase-Based Progress Estimates

EA-KAFOfor Cerebral Palsy

This trial is testing a new adjustable brace to improve crouch gait in children with CP.

19 Spina Bifida Clinical Trials Near Me

Calgary, Canada

Grand Rapids, MI

Vancouver, Canada

New York, NY

More Trial Locations

An interactive map to display trial locations for Pediatric Onset of Neuromotor Impairments Lab, Alberta Children's Hospital, Grand Valley State University, The Motion Lab, Sunny Hill Health Centre at BC Children's Hospital, Weill Cornell Medicine, and 24 more locations.

Most Popular References for Spina Bifida Clinical Trials

Frequency

Citation

31

TIWARI, S, and D BHOWMIK. 2008. “Staging of CKD: Is a New Stage Needed”. American Journal of Kidney Diseases. Elsevier BV. doi:10.1053/j.ajkd.2007.11.016.

11

Schwartz, George J., Alvaro Muñoz, Michael F. Schneider, Robert H. Mak, Frederick Kaskel, Bradley A. Warady, and Susan L. Furth. 2009. “New Equations to Estimate GFR in Children with CKD”. Journal of the American Society of Nephrology. American Society of Nephrology (ASN). doi:10.1681/asn.2008030287.

7

Adzick, N. Scott, Elizabeth A. Thom, Catherine Y. Spong, John W. Brock III, Pamela K. Burrows, Mark P. Johnson, Lori J. Howell, et al.. 2011. “A Randomized Trial of Prenatal Versus Postnatal Repair of Myelomeningocele”. New England Journal of Medicine. Massachusetts Medical Society. doi:10.1056/nejmoa1014379.

6

Collins, Francis S., and Harold Varmus. 2015. “A New Initiative on Precision Medicine”. New England Journal of Medicine. Massachusetts Medical Society. doi:10.1056/nejmp1500523.

5

Stöhrer, Manfred, Bertil Blok, David Castro-Diaz, Emanuel Chartier-Kastler, Giulio Del Popolo, Guus Kramer, Jürgen Pannek, Piotr Radziszewski, and Jean-Jacques Wyndaele. 2009. “EAU Guidelines on Neurogenic Lower Urinary Tract Dysfunction”. European Urology. Elsevier BV. doi:10.1016/j.eururo.2009.04.028.

3

Ok. https://doi.org/10.1542/peds.2007-1270.

3

Chang, Peter, Konrad M. Szymanski, Rodney L. Dunn, Jonathan J. Chipman, Mark S. Litwin, Paul L. Nguyen, Christopher J. Sweeney, et al.. 2011. “Expanded Prostate Cancer Index Composite for Clinical Practice: Development and Validation of a Practical Health Related Quality of Life Instrument for Use in the Routine Clinical Care of Patients with Prostate Cancer”. Journal of Urology. Ovid Technologies (Wolters Kluwer Health). doi:10.1016/j.juro.2011.04.085.

3

Belfort, Michael A., William E. Whitehead, Alireza A. Shamshirsaz, Zhoobin H. Bateni, Oluyinka O. Olutoye, Olutoyin A. Olutoye, David G. Mann, et al.. 2017. “Fetoscopic Open Neural Tube Defect Repair”. Obstetrics & Gynecology. Ovid Technologies (Wolters Kluwer Health). doi:10.1097/aog.0000000000001941.

3

Ravens-Sieberer, Ulrike, Pascal Auquier, Michael Erhart, Angela Gosch, Luis Rajmil, Jeanet Bruil, Mick Power, et al.. 2007. “The KIDSCREEN-27 Quality of Life Measure for Children and Adolescents: Psychometric Results from a Cross-cultural Survey in 13 European Countries”. Quality of Life Research. Springer Science and Business Media LLC. doi:10.1007/s11136-007-9240-2.

3

OAKESHOTT, PIPPA, GILLIAN M HUNT, ALISON POULTON, and FIONA REID. 2009. “Expectation of Life and Unexpected Death in Open Spina Bifida: A 40-year Complete, Non-selective, Longitudinal Cohort Study”. Developmental Medicine & Child Neurology. Wiley. doi:10.1111/j.1469-8749.2009.03543.x.

Top Hospitals for Spina Bifida Clinical Trials

Location

Active Spina Bifida Clinical Trials

All Time Trials for Spina Bifida

First Recorded Spina Bifida Trial

Trials

Grand Valley State University, Grand Rapids, Michigan

2

2

2021

Manual Wheelchair Skills Training for Cerebral Palsy

, Power Wheelchair Standing Device for Cerebral Palsy

Wellington Regional Medical Center, Wellington, Florida

2

2

2018

In Utero Endoscopic Correction of Myelomeningocele IDE - Laparotomy/Uterine Exteriorization Technique for Acrania

, Fetoscopy for Acrania

Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario

2

4

2009

e-health application for Aura

, Solution-Focused Coaching in Pediatric Rehabilitation for Health Behaviors

Texas Childrens Hospital, Houston, Texas

2

2

2014

fetoscopic surgical repair for Acrania

, fetoscopy for Acrania

Pediatric Onset of Neuromotor Impairments Lab, Alberta Children's Hospital, Calgary, Alberta

1

1

2022

Robotic Training Period for Brain Injuries

Top Treatments for Spina Bifida Clinical Trials

Treatment Name

Active Spina Bifida Clinical Trials

All Time Trials for Spina Bifida

First Recorded Spina Bifida Trial

Trials

Fetoscopy

2

4

2017

Fetoscopy for Acrania

, Fetoscopy for Acrania

Robotic Training Period

1

1

2022

Robotic Training Period for Brain Injuries

Manual Wheelchair Skills Training

1

1

2022

Manual Wheelchair Skills Training for Cerebral Palsy

Agilik

1

1

2022

Agilik for Spinal Cord Injuries

Surgery

1

1

2022

Surgery for Tethered Cord Syndrome

Top Cities for Spina Bifida Clinical Trials

City

Active Spina Bifida Clinical Trials

Top Active Site for Spina Bifida Clinical Trials

Trial List

Houston, Texas

3

Texas Childrens Hospital

NEOX Cord 1K applied fetoscopically for Myelomeningocele

, fetoscopic surgical repair for Acrania

, fetoscopy for Acrania

Grand Rapids, Michigan

2

Grand Valley State University

Manual Wheelchair Skills Training for Cerebral Palsy

, Power Wheelchair Standing Device for Cerebral Palsy

Wellington, Florida

2

Wellington Regional Medical Center

In Utero Endoscopic Correction of Myelomeningocele IDE - Laparotomy/Uterine Exteriorization Technique for Acrania

, Fetoscopy for Acrania

London, Ontario

2

Lawson Health Research Institute

e-health application for Aura

, Solution-Focused Coaching in Pediatric Rehabilitation for Health Behaviors

Toronto, Ontario

2

Holland Bloorview Kids Rehabilitation Hospital

e-health application for Aura

, Solution-Focused Coaching in Pediatric Rehabilitation for Health Behaviors

Which phases are most popular for spina bifida clinical trials?

Phase

Active Spina Bifida Clinical Trials

Number of Unique Treatments

Number of Active Locations

Trial List

Phase 1

2

2

0

fetoscopic surgical repair for Acrania

, fetoscopy for Acrania

Phase 2

1

1

1

Surgery for Tethered Cord Syndrome

N/A

16

15

24

Robotic Training Period for Brain Injuries

, Manual Wheelchair Skills Training for Cerebral Palsy

, Agilik for Spinal Cord Injuries ... View More

How many spina bifida clinical trials are open to youth and / or seniors?

Age Group

Active Spina Bifida Clinical Trials

Trial List

< 18

3

Manual Wheelchair Skills Training for Cerebral Palsy

, Power Wheelchair Standing Device for Cerebral Palsy

, e-health application for Aura

18+

4

NEOX Cord 1K applied fetoscopically for Myelomeningocele

, Minimally invasive fetoscopic repair of MMC for Acrania

, Fetoscopy for Acrania ... View More

18 - 65

4

In Utero Endoscopic Correction of Myelomeningocele IDE - Laparotomy/Uterine Exteriorization Technique for Acrania

, fetoscopic surgical repair for Acrania

, Fetoscopy for Acrania ... View More

< 65

3

Agilik for Spinal Cord Injuries

, Engagement in a 8-week community-based activity program for Cerebral Palsy

, Solution-Focused Coaching in Pediatric Rehabilitation for Health Behaviors

Any Age

5

Robotic Training Period for Brain Injuries

, Surgery for Tethered Cord Syndrome

, Aim 2 for Spina Bifida ... View More

Most Recent Spina Bifida Clinical Trials

Clinical Trial

Began Recruiting Date

Phase

Robotic Training Period for Brain Injuries

7/4/2022

N/A

Surgery for Tethered Cord Syndrome

5/19/2022

Phase 2

Agilik for Spinal Cord Injuries

5/6/2022

N/A

Manual Wheelchair Skills Training for Cerebral Palsy

5/5/2022

N/A

Power Wheelchair Standing Device for Cerebral Palsy

11/12/2021

N/A

Pediatric Spina Bifida Clinical Trials

Clinical Trial

Began Recruiting Date

Phase

Robotic Training Period for Brain Injuries

7/4/2022

N/A

Surgery for Tethered Cord Syndrome

5/19/2022

Phase 2

Agilik for Spinal Cord Injuries

5/6/2022

N/A

Manual Wheelchair Skills Training for Cerebral Palsy

5/5/2022

N/A

Power Wheelchair Standing Device for Cerebral Palsy

11/12/2021

N/A

Senior Friendly Spina Bifida Clinical Trials

Clinical Trial

Began Recruiting Date

Phase

Robotic Training Period for Brain Injuries

7/4/2022

N/A

Surgery for Tethered Cord Syndrome

5/19/2022

Phase 2

NEOX Cord 1K applied fetoscopically for Myelomeningocele

8/28/2020

N/A

Aim 2 for Spina Bifida

12/1/2019

N/A

eM2M for Spina Bifida

8/9/2019

N/A

About The Author

Michael Gill - B. Sc.

First Published: October 24th, 2021

Last Reviewed: August 28th, 2022

Michael Gill holds a Bachelors of Science in Integrated Science and Mathematics from McMaster University. During his degree he devoted considerable time modeling the pharmacodynamics of promising drug candidates. Since then, he has leveraged this knowledge of the investigational new drug ecosystem to help his father navigate clinical trials for multiple myeloma, an experience which prompted him to co-found Power Life Sciences: a company that helps patients access randomized controlled trials.

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