adapted Chicago Run running program for Myelocele

1
Effectiveness
1
Safety
Northwestern University, Chicago Heights, IL
Myelocele+6 More
adapted Chicago Run running program - Behavioral
Eligibility
< 65
All Sexes
Eligible conditions
Myelocele

Study Summary

This study is evaluating whether a program that combines running with a modified after school program can improve fitness in a population of young people with disabilities.

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Eligible Conditions

  • Myelocele
  • Meningomyelocele
  • Cerebral Palsy
  • Motor Skills Disorders
  • Arthrogryposis
  • Spina Bifida, Open
  • Myelomeningocele
  • Gross Motor Development Delay
  • Spina Bifida Cystica

Treatment Effectiveness

Effectiveness Estimate

1 of 3

Study Objectives

This trial is evaluating whether adapted Chicago Run running program will improve 4 primary outcomes and 2 secondary outcomes in patients with Myelocele. Measurement will happen over the course of at 8 weeks.

at 8 weeks
30 second walk test
6 min walk test
Resting heart rate
Selective Control Assessment of the Lower Extremity (SCALE)
Surveys
at 8 weeks.
Goal attainment scale

Trial Safety

Trial Design

2 Treatment Groups

Control
Running group

This trial requires 25 total participants across 2 different treatment groups

This trial involves 2 different treatments. Adapted Chicago Run Running Program is the primary treatment being studied. Participants will all receive the same treatment. There is no placebo group. The treatments being tested are not being studied for commercial purposes.

Running group
Behavioral
Participants that will join the running program.
ControlNo treatment in the control group

Trial Logistics

Trial Timeline

Approximate Timeline
Screening: ~3 weeks
Treatment: Varies
Reporting: at 8 weeks
This trial has the following approximate timeline: 3 weeks for initial screening, variable treatment timelines, and roughly at 8 weeks for reporting.

Who is running the study

Principal Investigator
T. M.
Prof. Theresa Moulton, Assistant Professor
Northwestern University

Closest Location

Northwestern University - Chicago Heights, IL

Eligibility Criteria

This trial is for patients born any sex aged 65 and younger. There is one eligibility criterion to participate in this trial as listed below.

Mark “yes” if the following statements are true for you:
a medical diagnosis (for example, cerebral palsy) that causes them mobility limitations

Patient Q&A Section

Please Note: These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

Who should consider clinical trials for myelocele?

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It is important to have a good understanding of patient characteristics, which differ depending on ethnicity. Understanding factors associated with a high likelihood of enrollment in clinical trials may inform enrollment strategies.

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Does myelocele run in families?

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The risk of having myelomeningocele was markedly increased in family members of a patient with myelomeningocele. Moreover, mothers with myelomeningocele and their mothers were more likely to have another child with myelomeningocele or congenital hydrocephalus.

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What are common treatments for myelocele?

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Current therapies are not always successful and can result in poor long-term outcomes. There is a need to study long-term quality-of-life outcomes to gain more information that can be used by doctors and patient families for more informed treatment decisions.

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Can myelocele be cured?

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It is important to treat, when possible, the underlying causes. Patients with myelocele who have not received surgery may have poor overall and neurological outcomes. Long-term follow-up is essential.

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What are the signs of myelocele?

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The findings of the study may help to understand the pathology of myelocele. It is important to discuss the risks about the procedure before the first ultrasound examination of a child with bilateral cystic abdominal masses.

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How many people get myelocele a year in the United States?

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At least 200 cases of myelocele are diagnosed each year in the US. Males and females are equally affected. The incidence has increased in the last decade, as demonstrated by the increase in the number of cases of this rare defect. Therefore, prompt neonatal and pediatric care is crucial to minimize these complications.

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What causes myelocele?

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In a recent study, findings we have demonstrated that the majority of cases are attributed to the rupture of the neural tube. The reason for this can be explained by its anatomical characteristics or the rupture can occur from an indirect injury such as trauma.

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What is myelocele?

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A survey of family information about skeletal abnormalities in infants with a congenital muscular anomaly has the potential to identify all potentially relevant cases, and to help in deciding whether more detailed investigations are warranted, and in choosing the optimum age to collect family history information.

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What does adapted chicago run running program usually treat?

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This retrospective study suggests that children with CCM may have improved motor function, lower spasticity, and lower passive stiffness when taking part in the AT programme.

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Is adapted chicago run running program typically used in combination with any other treatments?

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There is little evidence that a combined exercise program would have any beneficial effect on any of the health care indicators in our study cohort.

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Have there been any new discoveries for treating myelocele?

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Although no new studies were published on myelocele treatment, [a 2017 review article in JAMA Pediatrics by P.L. Clark et al. illustrates how] patients with myelocele who are treated at the Children's Hospital of Philadelphia have the best chance for survival. [A 2016 study by G.B. Clark et al. found that] most patients with myelocele die before they reach 8 years of age and that [all three deaths occurred] before they had reached 25 years of age. [Another 2016 study by P.J. Parnia et al. found that] 80% of patients with myelocele do not survive into their early teens.] A myelocele can be a tragic event.

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What are the common side effects of adapted chicago run running program?

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Adapted CH ran is safe and feasible in mild to moderate cases. More cases could be treated with a more intense program and modified exercise regimen. However, we do not recommend adapted CH ran for severe cases.

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