Parkinson’s Foundation Enrolls 10,000th Patient in Largest Clinical Trial of the Disease Ever

By Carolina Henriques

The Parkinson’s Foundation has enrolled the 10,000th patient in the largest clinical trial of the disease yet to be conducted.

Among the critical discoveries so far, the research has shown that regular visits to neurologists, more exercise, and more attention to mental health could help improve patients’ wellbeing.

The Parkinson’s Outcomes Project is evaluating a broad range of factors associated with the disease, including medications, treatments, movement symptoms, cognition, anxiety and depression, and the disorder’s burden on caregivers.

Launched in 2009, the project has become a comprehensive platform for studying the lives of Parkinson’s patients. And it has led to the formation of a consortium of 29 experts in five countries.

The study includes over 100 people who have lived with Parkinson’s for more than 30 years and 83 who learned about their diagnosis before they were 30 years old. Its records include 25,000 visits to doctors and information from almost 9,000 caregivers.

Key conclusions drawn from the study include:

Regular visits to neurologists should be a priority for patients and caregivers because it could save thousands of lives a year.

Recent research has listed regular visits to a neurologist as an important step in Parkinson’s management. However, in a 2011 study, only 58 percent of 138,000 Parkinson’s-related difficulties led to neurologist care. Race was a significant demographic predictor of neurologist treatment, with non-whites being less likely to receive care.

Doctors should give patients’ physical activity more attention because studies have shown that increasing exercise and movement to at least 2 1/2 hours a week can slow the decline in patients’ quality of life.

Researchers have found that, in Parkinson’s, it’s not the type of exercise a patient engages in, but the frequency of the workout that’s important. Physical therapists recommend exercises whose goals include improving balance and coordination, flexibility, endurance, and strength.

Patient’s mental health should be a priority because researchers have found that depression and anxiety are leading factors in patients’ overall health.

Depression is one of the most common non-movement symptoms of the disease, with up to 60 percent of patients affected at one time or another.

Finally, doctors should do a better job of addressing gender differences between patients. A key reason is that many men can rely on wives and other family members for daily support and doctor visits. Women are less likely to have family caregiver support and be more frequent users of formal, paid caregiver services.

This discovery is supported by recent findings that confirm these gender disparities, such as a study in Neurology in 2017.

“We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” Peter Schmidt, the senior vice president of the Parkinson’s Foundation, said in a press release. He has been directing the study.

“This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more,” added Thomas Davis, the study’s co-chair.

Researchers have been using the Parkinson’s Foundation’s Centers of Excellence network of 42 medical centers to enroll patients in the study.

In addition, “we are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, who oversees the study’s operations. “Our goal is to help identify the best care and disseminate that information widely.”

The post Parkinson’s Foundation Enrolls 10,000th Patient in Largest Clinical Trial of the Disease Ever appeared first on Parkinson’s News Today.

Source:: Parkinson’s Today

Laser Shoes Help Prevent Parkinson’s Patients from Freezing in Place While Walking

By Carolina Henriques

Dutch researchers have developed laser shoes to help Parkinson’s patients overcome a brain disconnect that causes them to stop walking when they want to keep going.

Lasers attached to each shoe give patients a visual cue of where they need to go. Without a visual cue, the brain disconnect often leads to patients freezing in place while walking. The freezes, which can last from several seconds to several minutes, increase the chance of a patient falling.

The lasers that the Dutch team added to the tops of shoes project lines on the floor that provide patients with the visual cues they need. The lasers work in sync with each other. One projects a line until the patient takes a step along that line. Then the laser on the other shoe projects a line.

Researchers published a study on the shoes in the journal Neurology. The title of the article is “The laser-shoes – a new ambulatory device to alleviate freezing of gait in Parkinson’s disease.

A debilitating symptom of Parkinson’s, freezing episodes are also dangerous. Because a patient’s foot remains on the floor while their upper body continues moving forward, it is easy for them to lose their balance and fall.

Dr. Murielle Ferraye and her colleagues at the University of Twente and Raboud University say the shoes reduced wearers’ freezing episodes by 46 percent. And when freezes did occur, the shoes cut the duration of the episodes in half.

Walking problems are most likely to occur when patients fail to take their medication on time. Not surprisingly, the researchers said the shoes provide the biggest benefit in these cases.

Parkinson’s patients can sometimes find visual cues such as street-crossing lines to help them walk. Inside their home, they can use floor tiles as cues. The laser shoes will provide them with cues all the time, indoors or out, the researchers said.

How do the visual clues work? By looking at objects on the floor, patients can activate circuits in their brain that overcome the disconnects that cause the freezing episodes.

“Our tests were administered in a controlled lab setting with and without medication,” Ferraye said in a University of Twente news story. Further research in their [patients’] everyday environment is necessary.

“Of the 19 patients who tested the shoes, the majority would be happy to use them,” she said. “The patients did not seem to mind that the laser was activated for each single step. Ideally, the laser should only be activated once the blockage is detected, but we’re not quite there yet. Freezing is a very complex phenomenon.”

The post Laser Shoes Help Prevent Parkinson’s Patients from Freezing in Place While Walking appeared first on Parkinson’s News Today.

Source:: Parkinson’s Today

Weight Loss Linked to Worse Outcomes in Parkinson’s Patients, Study Shows

By Patricia Inacio, PhD

Weight loss in Parkinson’s disease patients increases the risks for dementia and dependency care, and reduces patients’ life expectancy, according to a new study.

These findings suggest that monitoring weight and timely dietary interventions to counteract weight loss may significantly improve the outcome of Parkinson’s disease patients.

The study, “Early weight loss in parkinsonism predicts poor outcomes: Evidence from an incident cohort study,” was published in the journal Neurology.

Researchers at the University of Aberdeen in Scotland followed 515 participants – 187 with Parkinson’s disease, 88 with the so-called atypical parkinsonism, and 240 controls – for a median of five years. During this period they registered patients’ weight and evaluated how weight variations influenced disease outcomes.

Individuals with atypical parkinsonism are characterized by some of the signs and symptoms of Parkinson’s disease – such as tremor, slowness, and walking problems – without having a Parkinson’s disease diagnosis.

“Weight loss is a common problem in Parkinson’s but it wasn’t clear before we did this how common it was, mainly because of biases in previous studies, or what the consequences were of weight loss. Our hypothesis was that people who are losing weight were going to have adverse outcomes,” Dr. Angus Macleod, the study’s lead author, said in a press release.

The results showed that patients with Parkinson’s disease and parkinsonism have, from early on, lower body weights compared to those without the disease, or controls. Further analysis also showed that weight loss occurring within one year of diagnosis was associated with a higher risk of dependency (patients are no longer able to perform daily activities), dementia, and death.

“Our finding that those who lose weight have poorer outcomes is important because reversing weight loss may therefore improve outcomes,” Macleod said. “Therefore, it is vital that further research investigate whether e.g. high calorie diets will improve outcomes in people with Parkinson’s who lose weight.”

“While other studies have demonstrated that weight loss is common in Parkinson’s, this is the first to consider the impact this symptom may have,” said Prof. David Dexter, deputy director of research at Parkinson’s UK, a charity that contributed funding for the research.

“It has yet to be determined whether this quicker progression can be corrected by supplementation with a high calorie diet, however this could be a key potential development,” Dexter added.

The post Weight Loss Linked to Worse Outcomes in Parkinson’s Patients, Study Shows appeared first on Parkinson’s News Today.

Source:: Parkinson’s Today

It Doesn’t Matter What Exercise as Long as You’re Exercising

By Sherri Woodbridge

Several years ago, when I was diagnosed with young onset PD, it seemed the rage in beneficial exercise for people with Parkinson’s disease was bicycling. A few years later, the craze seemed to turn to dance. Now it seems as though boxing could be the in thing. As the others appear to come and go in cycles, one form of exercise that appears to remain consistent and advantageous is tai chi.

The question is, what exercise is best? I think the simple answer is whatever feels best and whatever you enjoy. None of it is bad for you and the most important thing is just to be doing something.

A real prospect exists that the physical movement involved in riding a bicycle, and in certain other forms of exercise, may alleviate the symptoms of the neurodegenerative condition we know more intimately as Parkinson’s disease.

The observation made by a research scientist from the Cleveland Clinic, in Ohio, that the physical symptoms associated with Parkinson’s appeared to improve in a personal friend who had ridden a tandem cycle. It seemed that there was a connection between forcing patients to move their legs faster than they would have otherwise been able to on their own, and because of this, there was a significant improvement in relieving symptoms.

In fact, further research from the Cleveland Clinic showed that forced exercise appeared to be more effective than drug treatment at improving symptoms in those with PD. They even went so far to suggest that forced exercise can also decrease some of the cognitive problems that can be associated with PD.

Studies have also shown that dance may be an effective alternative to traditional exercise for those with Parkinson’s disease. Staying active is crucial for those of us who have PD and dancing has been shown to lessen tremors and improve flexibility, as well as lifting mood.

“The positive effect that dancing has on us is quite magical,” says Alison Underwood, diagnosed with PD 10 years ago and now in her 60s. I don’t know about you, but I could use a little magic while living with this little monster we call Parkinson’s disease.

Boxing is definitely on the list of exercise popular among PD patients of late. Of course, it may not be the exercise of choice for everyone, but it has definitely become trendy. One such program is called Rock Steady Boxing. It is a non-contact program specifically designed for those with Parkinson’s to help strengthen motor skills, balance, speech, and sensory function.

A side benefit of getting out and getting some exercise is being around other people like us, those who struggle day-to-day with symptoms pertaining to PD. We can encourage each other to keep on keeping on.

 

Source:: Parkinson’s Today

First Drug Approved for Dyskinesia in Parkinson’s Disease

By Kristen Teesdale

Adamas Pharmaceuticals yesterday announced U.S. Food and Drug Administration (FDA) approval of an extended-release formulation of amantadine (GOCOVRI) to treat dyskinesia in Parkinson’s disease (PD). This is the first drug indicated specifically for dyskinesia — uncontrolled, involuntary movements that can develop with long-term levodopa use.

Extended-release amantadine is intended to be taken once daily at bedtime. In this way it can control dyskinesia during the day, when it typically is most prevalent. The new therapy’s approval is based on data from three placebo-controlled trials that demonstrated safety and efficacy. In addition to easing dyskinesia, the drug also may lessen total daily “off” time, when Parkinson’s symptoms return because medication is not working optimally.

The Michael J. Fox Foundation (MJFF) helped move this drug to market by supporting the creation and authentication of the Unified Dyskinesia Rating Scale, a tool that was used to measure the drug’s impact in trials.

“Dyskinesia can significantly compromise quality of life for people with Parkinson’s,” says Todd Sherer, MJFF CEO. “We are pleased that patients have another option to manage this aspect of the disease and glad the Unified Dyskinesia Rating Scale — a tool our support helped develop and validate — could show clinical efficacy of GOCOVRI for the treatment of dyskinesia.”

Extended-release amantadine is a reformulation of a currently available generic immediate-release version, which is approved to treat Parkinson’s symptoms. (Read more about this and other medications for Parkinson’s disease.)

Read more about extended-release amantadine.

Register for Fox Trial Finder to participate in dyskinesia and other studies to advance PD understandings and therapies.

Source: Fox Feed Blog

Visual system changes that may signal parkinson’s disease

Changes in the visual systems of newly diagnosed Parkinson’s disease patients may provide important biomarkers for the early detection and monitoring of the disease, according to a new study published online in the journal Radiology.

“Just as the eye is a window into the body, the visual system is a window into brain disorders,” said lead researcher Alessandro Arrigo, M.D., a resident in ophthalmology at the University Vita-Salute San Raffaele of Milan, Italy.

Parkinson’s disease is a neurodegenerative condition caused by neuronal loss in several brain structures. Parkinson’s disease is characterized by tremors, rigidity or stiffness throughout the body, and impaired balance and coordination.

“Although Parkinson’s disease is primarily considered a motor disorder, several studies have shown non-motor symptoms are common across all stages of the disease,” Dr. Arrigo said. “However, these symptoms are often undiagnosed because patients are unaware of the link to the disease and, as a result, they may be under-treated.”

Non-motor symptoms experienced by patients with Parkinson’s disease include visual alterations such as an inability to perceive colors, a change in visual acuity, and a decrease in blinking which can lead to dry eye. Read more…

Source: Science Daily

Online Survey Participants Needed: Alabama PD Patients and Caregivers

Find a Cure Panel (FACP) specializes in patient research for rare and serious diseases and they have some confidential and anonymous online research for people and caregivers with PD. If you complete the survey, FACP will donate $50 to the Parkinson’s Association of Alabama.

The completed survey is tracked anonymously off the customized link below.

To qualify for this online survey,

1)      You or your loved must have had PD for 5+ years;

2)      a) Your or your loved one must have or had experience with DBS OR b) be currently on Sinemet or Rytary or their generics.

3)      PD must have some impact on your life. If you have NO off time then you will not qualify for this research.

4)      It’s best to take the survey on a computer/ipad/tablet and NOT a smart phone.

If you are interested in participating, please click on the survey link below.

Survey link

https://www.sampleczar.com/survey/SC_RD.aspx?supplier_id=5096

If you have any questions about participating, please email FACP at info@findacurepanel.com

Discovery may lead to a treatment to slow Parkinson’s disease

Scientists have shown that the most common genetic cause of Parkinson’s disease — a mutant LRRK2 kinase enzyme — contributes to the formation of inclusions in neurons, resembling one of the hallmark pathologies seen in Parkinson’s disease. These inclusions are made up of aggregated alpha synuclein protein, which — the research also shows — can be prevented from forming by using two LRRK2 kinase inhibitor drugs now being developed for clinical use. Click the link below to read the full article…

Source: Science Daily

Record Pace of Recruitment Speeds Isradipine Trial

Great Clinical Trial Insight from the Michael J Fox Foundation By Allyse Falce.

Clinical trial news update: A recent MedPage Today article, “Quick Enrollment for STEADY-PD III Trial,” highlighted the accelerated enrollment of participants in the Safety, Tolerability and Efficacy Assessment of Dynacirc for PD (STEADY-PD) III trial, thanks in part to MJFF’s online trial matching tool, Fox Trial Finder.

A few months ago, we interviewed Kevin Biglan, MD, MPH, associate chair of clinical research for the Department of Neurology at the University of Rochester and co-principal investigator of STEADY-PD. Read more below about the trial and the remarkable efforts that led to the study’s successful recruitment:


Phase III testing for the compound isradipine is progressing after a remarkably short recruitment period; 336 participants enrolled in less than one year. Slow recruitment is a significant roadblock to testing of potential treatments and slows the pace of bringing new drugs to market. This success advances the pace of this study and may serve as a model for other programs.

Isradipine is a calcium channel blocker currently prescribed to treat high blood pressure. It came to the attention of Parkinson’s researchers when data from large studies showed lower risk of Parkinson’s disease (PD) among people who took the drug for hypertension. Scientists believe isradipine works to prevent the death of dopamine-producing cells and therefore may slow the progression of PD. The Michael J. Fox Foundation (MJFF) funded pre-clinical work to make that connection, as well as the Phase II trial. In 2014, isradipine researchers received a $23 million grant from the National Institutes of Health to move the Safety, Tolerability and Efficacy Assessment of Dynacirc® for PD (STEADY-PD) study into Phase III efficacy testing. Dynacirc® is the commercial name of the isradipine hypertension drug.

Kevin Biglan, MD, MPH, associate chair of clinical research for the Department of Neurology at the University of Rochester, is co-principal investigator of STEADY-PD. Dr. Biglan spoke to MJFF about the study’s successful recruitment period, and answered some commonly asked questions about Parkinson’s disease and calcium.

MJFF: Congratulations on completing study recruitment. What kind of participants were you looking for and how did you find them?

KB: We were looking for newly diagnosed individuals who had not yet started treatment for PD. Traditionally, this is a very difficult population to recruit. These individuals are just getting the news that they have Parkinson’s disease, and they’re not necessarily thinking about participating in research. And a lot of newly diagnosed people need treatment right away, so that eliminates many potential volunteers.

About 60 percent of people enrolled directly through the 55 study sites. The second largest group came through the MJFF online trial matching tool Fox Trial Finder. One hundred people were prescreened through the site, and about half of them ended up enrolling. And another subset of participants were referred by neurologists outside of the study sites.

Our timeline was 18 months; we were six months ahead of schedule. We worked with MJFF on a recruitment plan, and we think our methods of communication with the study sites and with volunteers who came through other sources may be of use to the Parkinson’s research community. We’re planning to write an article and share those tactics soon.

MJFF: How does accelerated trial recruitment speed drug development?

KB: The biggest barrier to drug development is enrolling an adequate number of individuals into a study. A lot of the time and costs of trials are associated with this delay in recruitment. The longer it takes to get people into a study, the longer it takes for us to find the results.

MJFF: When might isradipine be approved to treat PD?

KB: The last person will be out of the study in November 2018. After that, it’ll probably be about three to six months before we have final results. That would put us into the beginning of 2019. If the results look promising, because it’s a readily available drug, it may be prescribed for Parkinson’s soon after.

MJFF: Many Parkinson’s patients who don’t have hypertension have asked if they should begin taking isradipine. Is this a good idea?

KB: At this point, we still don’t know that isradipine has beneficial effects on Parkinson’s disease, so we recommend that people don’t start taking this medication until we have more information. Also, low blood pressure is a symptom of PD, and if you don’t have hypertension, this medication may exacerbate that condition. There are other side effects, mainly dizziness and swelling, associated with isradipine, too. Certainly, before you start any medication you should talk to your physician about it. There could be something specific to you that might put you at higher risk of developing problems, so it’s not something people should start without some discussion.

MJFF: If a patient is currently taking another calcium channel blocker, should they switch to isradipine?

KB: If a person with PD needs to be on a calcium channel blocker, for whatever reason, high blood pressure or otherwise, and their cardiologist or primary care doctor thinks isradipine is a reasonable alternative choice, then there’s likely no harm in switching between calcium channel blockers. But again, that’s a discussion that needs to occur between the patient and physician.

MJFF: Since this is a calcium blocker, should people stop taking calcium supplements? Or cut out calcium-rich foods?

KB: There’s no reason to worry about calcium supplements or calcium-rich foods. With isradipine, it’s targeting a specific calcium channel in the brain that we think may play a role in the cause of Parkinson’s disease. Calcium itself is highly regulated in the bloodstream. You don’t need to stop taking calcium supplements or avoid calcium-rich foods; there’s no evidence that those things have any negative effect on Parkinson’s disease.

MJFF: Thanks for speaking with us, Dr. Biglan. Anything else you’d like to add?

KB: We’re incredibly grateful to the Parkinson’s community for their partnership in this study. It’s going to allow us to answer a very important question about whether this treatment can slow progression of Parkinson’s disease sooner than we would have been able to without the assistance of patients, their families, and advocacy and research organizations.

Source:: Fox Feed Blog

Eat Your Pie Pizza and Support Parkinson’s research

Whats better than pizza?!? Your Pie Pizza that supports Parkinson’s disease research! PAA is thrilled to partner with Your Pie Birmingham this Monday, April 25 to accelerate a cure for Parkinson’s through their delicious pizza. Your Pie will generously donate 10% of it’s Monday proceeds to PAA programs that help accelerate a cure for PD and we can think of no better way to close out a Monday. Be sure mention the Parkinson’s Association of Alabama when ordering and we look forward to seeing you there.