Modified Virtual Reality Gaming for Rett Syndrome

Phase-Based Progress Estimates
1
Effectiveness
1
Safety
Georgetown University School of Medicine, Washington, United States
Rett Syndrome+1 More
Modified Virtual Reality Gaming - Behavioral
Eligibility
< 65
All Sexes
What conditions do you have?
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Study Summary

This study is evaluating whether a computer based intervention can improve quality of life for people with autism.

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Eligible Conditions

  • Rett Syndrome

Treatment Effectiveness

Study Objectives

This trial is evaluating whether Modified Virtual Reality Gaming will improve 1 primary outcome and 2 secondary outcomes in patients with Rett Syndrome. Measurement will happen over the course of To assess if a change in FROM occurs during the study, this test is administered on Day 1 (Baseline) and repeated at Day 120 (Post-intervention).

Day 120
Functional Range of Motion (FROM)
Month 5
functional Reach Test
Day 120
Goal Attainment Scale (GAS)

Trial Safety

Trial Design

1 Treatment Group

Participants
1 of 1
Experimental Treatment

This trial requires 10 total participants across 1 different treatment group

This trial involves a single treatment. Modified Virtual Reality Gaming 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.

Participants
Behavioral
The study involves a pre-intervention phase (4 weeks long), followed by a cause and effect training phase (1 week long), followed by an intervention phase (12 weeks long), and ending with a post-intervention phase (4-weeks long) for a total of 5-6 months from start to finish.

Trial Logistics

Trial Timeline

Approximate Timeline
Screening: ~3 weeks
Treatment: Varies
Reporting: to measure change, this test is administered (repeated) 5 times during the 5 month study: day 1 (baseline); day 32 (start of wk long training); day 40 (after one wk training session); day day 130 (end of 12 wk intervention); day 160 (post-intervention).
This trial has the following approximate timeline: 3 weeks for initial screening, variable treatment timelines, and roughly to measure change, this test is administered (repeated) 5 times during the 5 month study: day 1 (baseline); day 32 (start of wk long training); day 40 (after one wk training session); day day 130 (end of 12 wk intervention); day 160 (post-intervention). for reporting.

Who is running the study

Principal Investigator
P. D.
Prof. Pamela Diener, Professor
Georgetown University

Closest Location

Georgetown University School of Medicine - Washington, United States

Eligibility Criteria

This trial is for patients born any sex aged 65 and younger. There are 3 eligibility criteria to participate in this trial as listed below.

Mark “yes” if the following statements are true for you:
Rett syndrome
Understanding of cause and effect
Functional range of motion of arms to complete the movements needed to control the games.

Patient Q&A Section

What causes rett syndrome?

"Genetic counseling should include discussion of risk factors for deafness and intellectual disability in offspring. A history that indicates an affected family member should be sought. Genetic testing for some rare, recessive disorders may be indicated." - Anonymous Online Contributor

Unverified Answer

What are common treatments for rett syndrome?

"There is no cure for rett syndrome. Treatments aim to support daily functioning, improve posture, and help the child develop communication skills. Pharmacological treatments for epilepsy include antiepileptic drugs such as carbamazepine and valproic acid. Treatment of sleep disturbance may be done with sleep training. Additional measures may include speech and language therapy. The presence of sensorineural hearing loss may necessitate the use of cochlear implants.\n" - Anonymous Online Contributor

Unverified Answer

Can rett syndrome be cured?

"The neurological disorder associated with sporadic cases of retinopathy of prematurity (ROP) may be due to retinal hypoxia or hypoxic encephalopathy caused by hypoxia in the periventricular leukomalacia (PVL) associated with low birth weight of the newborn. PVL and hypoxic encephalopathy may be related. Findings from a recent study demonstrates that PVL in association with low birth weight of preterm infants is a potential therapy to reduce the incidence of neurocognitive disorders associated with ROP." - Anonymous Online Contributor

Unverified Answer

How many people get rett syndrome a year in the United States?

"In a recent study, findings demonstrates that the incidence of RS among US children is significantly higher than previously reported. The number of children diagnosed with RS may be up to 3 times lower than the true number. Because the age of most patients with RS can sometimes be difficult to identify, the true number of cases is likely higher, especially in areas with a predominance of children without ASD. Further investigation is warranted to determine the underlying etiology for these findings. Clinically, however, the current study demonstrates the importance of proper diagnostic algorithms, because misdiagnosis and delayed treatment adversely affect patient outcome." - Anonymous Online Contributor

Unverified Answer

What is rett syndrome?

"The diagnosis of retinitis pigmentosa can be difficult in cases of bilateral absence of the central visual field. This difficulty is more evident in infants' eyes." - Anonymous Online Contributor

Unverified Answer

What are the signs of rett syndrome?

"The signs are more frequent and more severe in this severe form of retinopathy of prematurity. Visual fields are often affected but there have been no studies demonstrating what else affects these." - Anonymous Online Contributor

Unverified Answer

What is the latest research for rett syndrome?

"The latest research findings are summarised below.\n[There is no conclusive proof that Rett syndrome (RTT) is caused by a gene abnormality. This is because the condition shows how some people with Rett syndrome are not in the same category. A more accurate term for such a condition would possibly be “Autistic spectrum disorder with epilepsy” (ASD-E)]. When the brain abnormalities are present, there are genetic factors involved. However, research has highlighted problems with the diagnosis of Rett syndrome. For example, autism spectrum disorders can include similar symptoms. For this reason, it is important to discuss what is included and excluded from the diagnostic criteria of Rett syndrome." - Anonymous Online Contributor

Unverified Answer

What is the primary cause of rett syndrome?

"The mechanism of causation of RE warrants further investigation. Possible mechanisms include genetic, prenatal, and postnatal insults. Because patients with a genetic trigger for RE may have more severe and more frequent manifestations of the disease, the possibility that the primary cause is genetic must now be strongly considered." - Anonymous Online Contributor

Unverified Answer

What is the average age someone gets rett syndrome?

"[Cite this article: "

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"Oleandra (plant)\n\nOleandra is a genus of about 20 species of Australasian trees and shrubs in the myrtle family, Myrtaceae. The genus is endemic to Australia and New Zealand." - Anonymous Online Contributor

Unverified Answer

What are the latest developments in modified virtual reality gaming for therapeutic use?

"A number of new techniques in virtual reality gaming are available, including an option to customize the virtual reality experience to the specific needs of the user and to increase the therapeutic efficacy of the therapy. Further research is necessary to quantify objectively the usefulness and applicability of the techniques described in this review article. (http://mhealth.biomedxico.com.mx/index.php?option=com_info&view=pdf&id=943&type=pdf)." - Anonymous Online Contributor

Unverified Answer

How does modified virtual reality gaming work?

"The objective and objective-oriented VR exercises had a positive impact on the balance stability in young adults with RS. Results from a recent clinical trial provided preliminary evidence that modification of VR exercises may be a promising tool for improvement of balance and balance confidence in young adults with RS." - Anonymous Online Contributor

Unverified Answer

Is modified virtual reality gaming safe for people?

"The authors concluded that VR is safe in a specialized clinical exercise program for patients with severe congenital heart and lung defects and for healthy patients of the same age." - Anonymous Online Contributor

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