Protocol Intervention Group for Huntington Disease
Assessing Efficacy of Neuropsychiatric Assessment and Treatment Protocols in Huntington's Disease Patients
See full descriptionAbout the trial for Huntington Disease
Treatment Groups
This trial involves 2 different treatments. Protocol Intervention Group 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.
Eligibility
This trial is for patients born any sex aged 18 and older. There are 6 eligibility criteria to participate in this trial as listed below.
Approximate Timelines
Measurement Requirements
This trial is evaluating whether Protocol Intervention Group will improve 8 primary outcomes in patients with Huntington Disease. Measurement will happen over the course of Baseline to 18 months.
Who is running the study
Principal InvestigatorPatient Q & A Section
What is huntington disease?
HD is an at-risk neurological disease that can cause emotional, cognitive, and behavioural symptoms. The disease also has other associated physical symptoms and behavioural changes including tremor, muscle rigidity (spasmodic), weight loss, and cognitive and functional deterioration.\n
What are common treatments for huntington disease?
Very few HD patients receive medication for psychiatric symptoms to treat cognitive, psychiatric, and functional symptoms. Data from a recent study of this retrospective study support recommendations for development of a structured comprehensive assessment of psychiatric symptoms, with a plan to provide treatment to HD patients with coexisting psychiatric symptoms.
What are the signs of huntington disease?
There is no universally accepted combination of signs and symptoms that would diagnose HD. Most HD-associated deficits are found only in the later stages of the disease, but they can be present before the onset of symptoms of HD in some cases.
How many people get huntington disease a year in the United States?
The year after HD diagnosis, 1.7 million people were living in the United States. HD has a significant public health burden in the United States.
What causes huntington disease?
Huntington disease is caused by an accumulation of an abnormal, repetitive protein. The gene that makes the protein is located on the telomeric end of the long arm of chromosome 4. The number of copies of this abnormal gene varies greatly between people, but each time a child is born there is a 50% chance that he or she will inherit a mutated copy. Most people with Huntington disease develop the disease in early life following a sudden increase in the number of copies. The age at onset is unpredictable and the time between onset and onset of signs may vary widely.
Can huntington disease be cured?
Huntingtin protein is not solely pathogenic in HD and has several known cell-protective functions. As such, the current therapeutic approaches that target this protein and/or its cleavage products are unlikely to result in an entirely "cured" HD phenotype. Instead, treatment targeted at preserving the cell-protective capacities of huntingtin will likely yield the best outcomes for patients and carers.
What is the latest research for huntington disease?
There is a lot of new research involving brain imaging, brain cell death markers and neuronal markers, and gene splicing techniques. While the research doesn't completely address the disease, it is important that there is continued discussion on Huntington's disease, no matter what the latest advancements are.
Is protocol intervention group safe for people?
This protocol was safe, and should be considered for future clinical trials. Clinicians should consider this protocol for people with HD and comorbidities and the patients should be told that they are eligible for an RCT.
What is the average age someone gets huntington disease?
In the year 2008, the median age for HD onset was 40 yr, with a interquartile age range of 29-50 yr, the longest documented HD lifespan was 88 yr. In a study of 1189 patients, the median age of onset of HD was 35 yr for stage 1 patients and 33 yr for stage 2 patients. HD is the most frequent cause of early-onset neurological deterioration after a first neurologic/neurodevelopmental event/s, with an incidence of 1:30 000-100 000 in males and 1:40 000-50 000 in females. Patients have good compliance with current treatments, and most of them live for the next 8 yr-15 yr after onset.
Is protocol intervention group typically used in combination with any other treatments?
Protocol is the most common treatment of choice for patients with HD, although no major comparisons had been made by treatment (i.e., different drugs or different dosing) between protocol and non-protocol groups. Although the clinical outcomes show promise for protocol, further comparison studies with a larger sample size are needed to confirm its effectiveness.
Have there been other clinical trials involving protocol intervention group?
There were 11 trials with a protocol intervention. Seven trials had no protocol intervention and four trial had a protocol intervention. Most trials that had a protocol intervention were conducted in USA or European countries. They concluded that there is not an absolute need for a protocol intervention and some clinical trials did not need protocol intervention to be effective. Most participants in the present study suffered from a variety of chronic diseases, which may have made their response to the protocol intervention difficult to detect.
Does huntington disease run in families?
Results suggest that the prevalence of the disease in the general population is increased in families. This could be an example of familial segregation or a clue to other familial factors in Huntington disease.