Posts

Two Parkinson’s Organizations Issue a Total of $5.9M in Research Grants

research grants

The Parkinson’s Foundation and the American Parkinson Disease Association (APDA) have announced a combined $5.9 million in research grants.

For its part, the Foundation is investing $4.2 million in 46 grants to advance promising Parkinson’s disease investigations into new therapies and how the disease works. It also is awarding $8 million to four newly designated Parkinson’s Foundation Research Centers to design and launch studies over the next four years.

“The Parkinson’s Foundation is committed to moving the needle forward in new treatments, medications and better understanding symptoms and disease progression,” John Lehr, the Foundation’s president and CEO, said in a press release. “These research grants are a critical component in our mission to make life better for people with Parkinson’s by improving care and advancing research towards a cure,” he said.

Ranging in length from several months to three years, the awards will go to clinicians and postdoctoral researchers, as well as established scientists. In addition, this grant cycle adds the Melvin Yahr Early Career Award in Movement Disorders Research, created to support post-residency neurologists. The two-year $50,000 grant will support study into brain inflammation in Parkinson’s patients.

“This award is critical for my early independent career development and will help me establish a research program of my own,” said Yulan Xiong, assistant professor at Kansas State University and Stanley Fahn Junior Faculty Award recipient. “The support from the Parkinson’s Foundation will help us better understand a critical PD-related gene. We expect this study will lead to new discoveries in Parkinson’s disease.”

The $8 million in institutional grants — $2 million for each center — will go to Columbia University Irving Medical Center, the University of Florida in collaboration with Emory University, the University of Michigan in collaboration with the University of Texas Southwestern Medical Center, and Yale School of Medicine. These recipients were chosen based on criteria such as research novelty and the ability to address unmet needs in Parkinson’s research.

More information about Parkinson’s Foundation research grants is available here.

At the American Parkinson Disease Association, researchers have been granted $1.7 million for study programs including T-cells and their disease role, genetic factors among Hispanic populations, and the prospects of telehealth psychotherapy in relieving depression.

Awardee highlights include Vikram Khurana, MD, PhD, Brigham and Women’s Hospital in Boston, Massachusetts, winner of the three-year George C. Cotzias Fellowship, the APDA’s most prestigious grant.  He will seek to learn how alpha-synuclein mutation or over-expression affects mRNA regulation in Parkinson’s, which could helpscientists to identify new therapeutic targets and potential gene therapies.

Livia Hecke Morais, PhD, California Institute of Technology, is a post-doctoral fellow who will study microbial brain interaction in Parkinson’s neurodegeneration to understand the relationship between gut bacteria and the disease. This ultimately may lead to the design of new therapies that target gut bacteria for treating Parkinson’s disease.

Research fellow Brian Daniels, PhD, Rutgers University in New Jersey, will investigate RIPK3, a protein associated with Alzheimer’s and amyotrophic lateral sclerosis, as a driver of  inflammation in Parkinson’s disease.

Research fellow Xianjun Dong, PhD, Harvard Medical School in Boston, will explore the possibility of a novel link between genetic susceptibility and Parkinson’s disease.

“We are excited for these researchers to dig deep into their work, and have hope for meaningful outcomes that can make a difference for people living with PD,” the APDA announcement stated.

A list of awardees and descriptions of research projects is available here.

The post Two Parkinson’s Organizations Issue a Total of $5.9M in Research Grants appeared first on Parkinson’s News Today.

Parkinson’s Advocates Set to Lobby US Lawmakers for Greater Research Support, Patient Assistance

Parkinson's Policy Forum

Joined by leaders in Parkinson’s (PD) research and public policy, some 150 patients and advocates from across the nation will gather in Washington, D.C., on Monday for the 2019 Parkinson’s Policy Forum.

The annual advocacy event, taking place Sept. 9–10, is presented this year by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from nine other organizations. With the aim of improving the impact of policy on PD research and care, the forum offers an opportunity for those living with Parkinson’s to not only connect, but to share their journey with elected officials.

”Policy and research must work hand-in-hand to speed scientific breakthroughs for patients and their families,” Todd Sherer, PhD, the Fox foundation’s CEO, said in a news release. “The Parkinson’s Policy Forum brings the community together to advocate for government policies that support research and care. Its goal is to improve quality of life for everyone impacted by the disease today.”

Forum attendees — mostly patients and care partners — will spend a full day with foundation and its scientific and policy experts brushing up on effective advocacy, and exploring ways to help shape their message. They’re off to Capitol Hill the next day, where advocates will apprise legislators of the ways in which policy can help — or hinder — Parkinson’s research and care. They’ll focus specifically on the economic burden of PD, as well as recent legislative moves to limit out-of-pocket prescription medicine costs for Medicare patients, and improve access to mental health services.

The nonprofit organizations said it’s vital that advocates and policymakers seize on current momentum in Parkinson’s, particularly in research and clinical drug testing. By next year, it is estimated that nearly 1 million U.S. residents will be living with the progressive disease.

”People with Parkinson’s disease and their families need legislative action with increased federal research funding to expand access to care that will help patients live healthier lives,” said John Lehr, CEO of the Parkinson’s Foundation. “The Parkinson’s Foundation leverages our nationwide network of healthcare professionals and research advocates to mobilize around PD community policy priorities. To better serve people with Parkinson’s and their families we must ensure they continue to have their voice heard by lawmakers.”

Visit this site for more forum information.

The post Parkinson’s Advocates Set to Lobby US Lawmakers for Greater Research Support, Patient Assistance appeared first on Parkinson’s News Today.

‘Women and PD’ Project by Parkinson’s Foundation Urges Changes in Research and Care

Women and PD Talk

Leading the first national effort to address long-standing gender disparities in Parkinson’s (PD) research and care, the Parkinson’s Foundation has developed patient-centered recommendations to promote the needs women in the U.S. living with the disease.
Drawn from the foundation’s two-year Women and PD Teams to Advance Learning and Knowledge (Women and PD Talk) project, the recommendations identify research and healthcare priorities voiced by women, while suggesting ways researchers might better address them. They are outlined in the report “Women and Parkinson’s: Closing the Gender Gap in Research and Care.”
Suggestions focus on research, care, and education and empowerment, and, under each topic, priority areas. Identified by women with PD, medical professionals and care teams, these priorities range from greater representation of women in Parkinson’s research, to more accessible care and patient self-management.
The overall purpose of the suggestions — known as the first research and care agenda in the U.S. specific to women — is to promote research and care practices that enable women with Parkinson’s to maximize their quality of life. They’re intended for use by researchers, medical professionals, funding agencies, and patients and their care teams.
“We really want to make sure that women are front and center in care, and that means working with societal structures to make sure women are prioritizing care,” Megan Feeney, the foundation’s spokesperson for Women and PD Talk, said in a phone interview with Parkinson’s News Today.
Parkinson’s affects roughly 1 million men and women in the United States and more than 10 million globally, with male patients outnumbering females by 3 to 2, Feeney said. The disease’s lower rate among women is not fully understood, as disease risk is due to multiple factors, including biology, environmental exposures and behavior, the report said. But this risk does increase with age, and women on average live longer than men.
At the crux of the project is the fact that, historically, Parkinson’s care has been based on studies that have focused mostly on men, or have not considered gender differences, the foundation said.
For instance, women can react differently to therapies and are more likely to receive lower-quality care, like poorer access to neurologists and other specialists, according to the report’s executive summary. They can also experience the disease differently. Women can have relatively more non-motor symptoms, such as cognitive and psychological issues that disproportionately affect their quality of life, then do men. Women also report more changes in their symptoms throughout the day, and compared with men, are more likely to be single or widowed.
“While the risk of developing PD is reduced in women, those diagnosed with the disease can encounter greater hurdles in obtaining an accurate diagnosis, experience more non-motor symptoms, face greater treatment-related dyskinesias, and may be less likely to see medical specialists than men with PD,” the publication said.
Funded for 2017–19 through a $250,000 Patient-Centered Outcomes Research Institute grant, Women and PD Talk is an outgrowth of the foundation’s umbrella Women and PD Initiative, which aims to ensure the health and well-being of female patients.
Over the past two years, the foundation and female stakeholders across the community hosted 10 regional forums — the final one in June — to educate and to understand the experiences of women with PD.  Attendees included healthcare professionals, government representatives, and care partners.
During breakout sessions, these women —  a total of 242 patients and 178 stakeholders — helped identify priorities and possible solutions. The national forum in Houston brought together 15 regional team leaders and 36 stakeholders to turn the real-world insights into an action plan for PD care.
“We asked people at the national forum to further prioritize, and to decide what researchers should focus on,” Feeney said. “That led to the agenda.”
Below are agenda topics, and a brief review of their priority areas and recommendations:

Research

1. Inclusiveness: Parkinson’s cannot be fully understood without greater representation of women in PD research, including studies of disease mechanisms, progression, and treatment response. More focus on recruiting female patients, reflecting a representative sample by demographics and disease stages, is crucial.
2. Relevance: Parkinson’s research must be relevant to women, and be designed around their unique needs. Research must include topics examining the effects of biological sex, including sex hormones, as they relate to PD risk, progression, and treatment response. Research must also examine the qualitative impact of PD on women. Additional study is needed to better understand the differences between aging, menopause, and Parkinson’s.
3. Quality: Existing data should be pooled and analyzed for information about women with PD. Further research findings should be required to be analyzed in consideration of sex/gender.

Care

4. Accessibility: Parkinson’s care must be accessible to women. Programs should target health, wellness and PD management, and should help women feel comfortable and included.
5. Personalization: Parkinson’s care should be personalized to women. Biological and gender/cultural differences influence PD health outcomes, and programs should be designed to address these differences.
6. Communication: Medical professionals and women with Parkinson’s should utilize shared decision-making tools to better communicate, and work together to identify treatment goals. Medical professionals should improve communication within the medical community to appropriately connect women with PD to available comprehensive services.

Education and Empowerment 

7. Self management: Provide women early in their diagnosis with the knowledge and tools needed to maintain a desired quality of life. Tools should assist them with maintaining their personal and professional relationships while managing their disease.
8. Shared responsibility: Care teams should better understand the needs and priorities of women with PD, be more involved, and not depend on a patient understanding of all aspects of her disease. Women also need access to peer-to-peer services created for women only.
9. Advocacy: Additional education efforts are necessary to increase public awareness about PD. Advocacy is needed to minimize the disparities women with PD experience. Additional attention to resources for women with PD should be a public policy issue.
Efforts don’t end there, Feeney said. The idea is to continue to build momentum with ongoing collaboration.
After all, women’s health outcomes are not solely dependent on medical care, genetics or biology, an initiative publication states. Societal norms, health behaviors, places of residence, and support structures are among factors that interact to influence their experiences.
“This is a multi-year project,” Feeney added. “Moving forward, we’ll continue to do other things to address these disparities.”

The post ‘Women and PD’ Project by Parkinson’s Foundation Urges Changes in Research and Care appeared first on Parkinson’s News Today.

New PDGENEration Program Will Offer Free Genetic Testing for Parkinson’s Patients

PDGENEration

PDGENEration, a new program offered through the Parkinson’s Foundation, will provide free genetic testing for people with Parkinson’s disease.

Around 15% of Parkinson’s cases are thought to involve a significant genetic component — but genetic testing for the disease has not been common.

“Mutations in several different genes increase the risk of Parkinson’s disease,” Roy N. Alcalay, MD, MS, a neurology professor at Columbia University and principle investigator of PDGENEration, said in a press release. “Until recently, we rarely offered genetic testing for people with Parkinson’s because the benefit had been unclear.”

That paradigm is changing, though. Thanks to recent research, an individual’s genetics can sometimes be used to predict disease outcomes, and new medications that are designed for people with specific Parkinson’s-associated mutations are starting to enter clinical trials.

“From our own genetic studies, I realized many people were eligible to enroll in such trials, but they didn’t know it because nobody told them about their genetic status,” Alcalay said. “I wanted to find a simple, ethical way to offer Parkinson’s patients information about their genotype if they are interested.”

That led to PDGENEration, which aims to give free genetic testing and counseling to people with Parkinson’s. The program currently is only available at Columbia, but there are plans to expand it to other centers in the U.S., with a goal of enrolling 15,000 patients. There are no age restrictions to participation.

PDGENEration will test patients for seven genes that are known to be related to Parkinson’s: GBA (glucocerebrosidase beta), LRRK2 (dardarin), PRKN (Parkin), PINK1 (PTEN induced putative kinase 1), PARK7 (DJ-1), VPS-35, and SNCA (alpha-synuclein).

As an illustration of the possible utility of this test, take GBA, which is mutated in up to 10% of people with Parkinson’s. The enzyme that this gene codes for helps cells clear out gunk, so when the gene doesn’t work, toxins can accumulate in cells. That is thought to be the mechanistic link to Parkinson’s. Clinical trials specific for Parkinson’s patients with GBA mutations are already enrolling (e.g. NCT02906020).

In addition to giving some patients information about clinical trials for which they might be eligible, PDGENEration hopes to gather data that will help researchers and clinicians to better understand the genetics of the disease. This will go beyond the seven known genes and include sequencing of all of the parts of the genome that code for protein (whole-exome sequencing).

“These data may be used for future discovery of additional Parkinson’s-related genes,” said Alcalay, adding, “We will invite all those who completed the genetic study to enroll in a longitudinal follow-up study, which could help us better understand how these mutations affect Parkinson’s progression. For instance, can patients with these genetic risk factors modify their risk with lifestyle changes?”

The genetic testing results obtained through this study will be confidentially sent to a secure central database for future Parkinson’s-related research.

More information about the program and how to enroll can be found here.

The post New PDGENEration Program Will Offer Free Genetic Testing for Parkinson’s Patients appeared first on Parkinson’s News Today.

Parkinson’s Foundation Names Three New Centers of Excellence

Parkinson’s Foundation Research Centers 

The Parkinson’s Foundation has added three Centers of Excellence to its international network of expert care providers for Parkinson’s disease  patients.

The new centers are the University of Colorado Movement Disorders Center, Jefferson Health’s Comprehensive Parkinson’s Disease & Movement Disorder Center, and Indiana University School of Medicine. The addition brings the foundation’s total number of centers to 48, including 34 in the United States.

The network’s hospitals and academic centers provide specialized teams of neurologists, movement disorder specialists, physical and occupational therapists, and mental health professionals, who are at the leading edge of  treatments and innovations for Parkinson’s.

”The newly designated Centers of Excellence join a network that is setting the highest standards of care for people with [Parkinson’s] worldwide,” John L. Lehr, CEO and president of the foundation, said in a press release. “We are proud to further our commitment to improving the quality of life for people with Parkinson’s and making a difference in underserved communities across the country.”

In making its selections, the foundation gave priority to medical centers that, in their applications, emphasized underserved populations. Each selected center also had to demonstrate the ability to provide top-shelf, evidence-based, patient-focused care, and to conduct pertinent clinical investigations that center on patient needs. In addition, each center had to show leadership in professional training, and be meaningfully involved in patient education and community outreach.

“We learned so much about our own program going through the rigorous process to receive the designation as a Parkinson Foundation Center of Excellence,” said Maureen Leehey, MD, professor of neurology and chief of the movement section at University of Colorado Anschutz Medical Campus.

”The team at the University of Colorado is thrilled to be part of a larger network of high-performing sites that allow us to share what we do well and create opportunities to raise the bar by incorporating successful programs from other sites,” Leehey said.

According to the press release, it’s likely only a “small percentage” of those living with Parkinson’s get optimal care from medical experts who specialize in the complicated disorder. The Center of Excellence network seeks to help remedy that. After five years, each center must recertify to ensure continuance of mandatory care standards.

Several centers are involved in the Parkinson’s Outcomes Project — the largest clinical investigation the foundation funds — which follows some 12,000 patients over time to learn which therapies work best. Indiana University participates in the PD GENEration effort, which provides free genetic counseling for the study.

Visit this website to find a Parkinson’s Foundation Center of Excellence, or call 800-4PD-INFO.

The post Parkinson’s Foundation Names Three New Centers of Excellence appeared first on Parkinson’s News Today.

Grants Will Establish Exercise Program for Parkinson’s Patients in Arkansas

exercise program

Grants totaling nearly $29,000 will enable the University of Arkansas for Medical Sciences (UAMS)  to establish a free exercise program for patients with Parkinson’s disease and Parkinson’s-like symptoms.

Some $13,924 from the Parkinson’s Foundation will go toward program staffing, training and other support. A $15,000 grant from the Philip R. Jonsson Foundation will pay for equipment. Classes start Aug. 20.

Designed to enhance patients’ overall quality of life, the program’s regimen will emphasize strength maintenance, balance improvement, and cognitive and social engagement.

“Treating Parkinson’s disease involves treating the whole person, and that means going beyond what we can accomplish during a clinical visit,” Rohit Dhall, MD, said in a press release. Dhall is director of neurodegenerative disorders in the UAMS department of neurology. “I am so happy that the central Arkansas Parkinson’s community will be able to benefit from this evidence-based, high-quality exercise program — all free of charge.”

Fitness instructors will receive Parkinson Wellness Recovery (PWR!) certification in PWR!Moves group and circuit class formats. The funding also will enable a physical therapist specializing in Parkinson’s disease to receive certification in research-based exercise approaches and task-specific training routines.

PWR!Moves is a Parkinson’s-specific skill-training program aimed at maintaining or restoring skills that deteriorate and interfere with everyday movements. Specifically, the program targets antigravity extension, weight shifting, axial mobility and transitions. The regimen aims to counteract Parkinson’s symptoms such as rigidity, bradykinesia (slowness of movement), lack of coordination, and loss of motor automaticity.

In the group class, patients will learn how to offset Parkinson’s symptoms and move “bigger and faster” during daily life. The course is designed to be fun and supportive, but physically and cognitively challenging.

The circuit will incorporate PWR!Moves into athletics, fitness and conventional gym activities such as coordination, strength, balance, agility, and flexibility training. Using different exercise stations — each with a specific focus — patients will work alone or with partners.

While each participant will receive personalized input regarding needs and goals, the program is crafted to benefit patients regardless of fitness and symptom levels. For instance, a new Solo-Step overhead track and harness system — in which a torso harness attaches to a room-length ceiling track — allows patients with concerns about balance or strength to exercise safely. Other grant-funded equipment will help participants with functions such as walking on uneven surfaces.

“Our approach combines the best of an individualized exercise experience with the social nature of group exercise,” said Chris Oholendt, program manager for UAMS outpatient physical therapy/occupational therapy. “We are thrilled to provide people with Parkinson’s and their care partners this unique program that will change the way they live with PD for the better.”

The post Grants Will Establish Exercise Program for Parkinson’s Patients in Arkansas appeared first on Parkinson’s News Today.

Four Research Centers Will Share $8 Million Parkinson’s Foundation Grant

Parkinson’s Foundation Research Centers 

The Parkinson’s Foundation has granted four U.S. institutions $8 million to design and launch Parkinson’s disease research studies over the next four years.

The newly designated Parkinson’s Foundation Research Centers will get $2 million each — $500,00o annually — to support their quests to drive innovative investigative developments, and advance studies toward a cure for Parkinson’s.

“We are proudly committed to funding promising Parkinson’s research to help drive change and better outcomes” for Parkinson’s patients, John L. Lehr, Parkinson’s Foundation CEO and president, said in a press release. “These recipients represent the very best and brightest, and we look forward to their major innovations in PD research and care.”

Under the expanded program, 66 applications were fielded from the U.S. and abroad, including those collaborating with other institutions. The four chosen were the Columbia University Irving Medical Center; the University of Florida, in collaboration with Emory University; the University of Michigan, in collaboration with the University of Texas Southwestern Medical Center;  and Yale School of Medicine.

The awards were based mostly on research novelty, the research’s ability to meet unmet needs, team synergy, and the investigation’s potential to make important discoveries.

“This support from the Parkinson’s Foundation will help us make a significant contribution to our understanding of Parkinson’s disease,” said Malu G. Tansey, PhD, director of the University of Florida’s Center for Translational Research in Neurodegenerative Disease. “We are thrilled they have chosen the University of Florida to help shape the future for people with Parkinson’s disease with new discoveries and better therapies.”

The new research centers each must take on at least three interconnected Parkinson’s investigations. Because innovations can occur during research, 10% of awards must be set aside for possible pilot projects or establishing new collaborations.

“We hope that fostering creativity and collaboration across multiple disciplines and looking at Parkinson’s from new angles will lead to important breakthroughs,” said James Beck, PhD, Parkinson’s Foundation senior vice president and chief scientific officer. “Not only research breakthroughs, but also finding new implications for precision care and ways to modify the disease itself.”

The award program is open to institutions globally that have, or can recruit, a team of scientists specializing in Parkinson’s. The team all may reside in the same geographical area and work at the same institution, or through a virtual center. Preference is given to applications that demonstrate cross-departmental or cross-instutional collaboration. The team will designate a center director — a recognized expert in Parkinson’s research — who will oversee all work. Research can be basic science or clinical research. Visit this site for more details. The next application process is expected to open in the fall of 2021.

The post Four Research Centers Will Share $8 Million Parkinson’s Foundation Grant appeared first on Parkinson’s News Today.

Panic Attacks Can Go Hand-in-Hand with Parkinson’s Disease

panic attacks

Twice in the past month I have had what I am calling panic (anxiety) attacks, which are something I had never experienced before. I had shortness of breath and my heart was beating much faster than normal. Since the only activity I was involved in at the time was trying to go to sleep, it concerned me. It scared me enough that I told my husband about it the following day.

I consulted Dr. Google and here’s what I found:

A study showed that panic attacks in Parkinson’s disease could possibly be a long-term complication of levodopa therapy. The keyword here is “possibly,” which isn’t definitive enough for me, plus the study is from 1993. I skipped that one and continued my search.

Dr. Google led me to the Parkinson’s Foundation, which stated, “Anxiety is a common non-motor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the brain chemistry of the brain.”

It went on to say that, “Anxiety (or panic) attacks usually start suddenly with a sense of severe physical and emotional distress. Individuals may feel as if they cannot breathe or are having a heart attack. They may feel they are experiencing a medical emergency. These episodes usually last a few minutes to an hour, particularly when associated with ‘off’ periods, though they can last for longer periods of time.” 

Several different sources agree that some of the symptoms of a panic attack can be trouble sleeping, heart palpitations, hyperventilating, uncontrollable worry, chest pain, dizziness, tunnel vision, and hot or cold flashes.

Bingo. They hit that nail on the head.

The list goes on and it can be hard to diagnose what is happening, as the symptoms mimic other possibilities of what could be going on. 

When I identified what I believed to be the culprit (a panic attack), I made a note to bring it up at my upcoming appointment with my neurologist. Until then, I decided to rely on the hope and faith I had within me. I forced myself to breathe normally and drew deep upon that faith. The attack finally subsided and I was able to quit worrying about getting the porch fixed and the gate repaired and the shower installed and the sink replaced and …

Here I go again … 

This time I’m diving deep into that faith before the panic kicks in. 

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Panic Attacks Can Go Hand-in-Hand with Parkinson’s Disease appeared first on Parkinson’s News Today.

At $52B Per Year, Economic Burden of Parkinson’s in U.S. Double Previous Estimates, Study Reports

economic burden Parkinson's

The annual economic burden of Parkinson’s disease on U.S. patients, families, and the federal government is nearly $52 billion, more than double the previous estimates, according to a comprehensive study by the Michael J. Fox Foundation (MJFF).

This is the first study to examine the various ways Parkinson’s affects a patient’s finances and their ability to participate in the labor market, according to a press release. The report is touted as the most complete assessment to date of the disease’s economic toll.

The $51.9 billion includes some $25.4 billion that goes toward hospitalizations, medications, and other direct medical costs, and $26.5 billion in non-medical costs such as missed work, lost wages, early forced retirement, and family caregiver time.

Previously, the combined direct and indirect costs of Parkinson’s in the United States were estimated at $25 billion annually. For many years, according to the release, the disorder’s financial impact was vastly underestimated.

Called “The Economic Burden of Parkinson’s Disease,” the study was conducted with support from the Parkinson’s Foundation, American Parkinson Disease Association, The Parkinson Alliance, and several pharmaceutical companies.

“There are a lot of surprise costs when you have Parkinson’s,” said Steve DeWitte, a Parkinson’s research funding advocate. “Beyond the rising costs of medications and healthcare, my family has shouldered the financial burden of my having to leave the workforce 15 years earlier than I had planned. That means our income dropped by more than half, and we’ve had to figure out how to stretch our budget to cover the everyday household tasks I can no longer physically do.”

The study also found that the federal government spends nearly $25 billion each year on patient care. Of that, $2 billion is paid through social security, with the balance handled by Medicare. Roughly 90% of Parkinson’s patients receives Medicare benefits.

“This data will help facilitate a new level of outcome-driven conversations with members of Congress who oversee federal programs that affect the lives of the 1 million people with Parkinson’s in the United States,” said Todd Sherer, PhD, MJFF’s CEO. “Investing more in research toward better treatments and a cure will ultimately relieve the burden on already-strained programs like Medicare, Medicaid and Social Security.”

These findings underscore the prospective impact of policy or treatment interventions, he added. Advocates now have more specific data they can use to educate lawmakers and to urge them to prioritize biomedical research investment and to develop support initiatives.

To understand and examine the cost components of Parkinson’s disease, the researchers used data from Medicare, the Centers for Disease Control and Prevention, the U.S. Census Bureau, and other sources. Such data-driven knowledge is expected to go a long way toward raising funds for research to find therapies to ultimately ease the growing burden.

“These results provide deep insight into the indirect costs — those costs the people living with Parkinson’s and their families must shoulder alone,” said James Beck, PhD, the Parkinson’s Foundation’s senior vice president and chief scientific officer. “Knowing this information will allow us to better serve people with Parkinson’s and their families in the areas they’re most concerned about and where we can have the most impact.”

The MJFF is now examining how this study can help shape its research policy priorities, as well as future public policy efforts related to the economic burden of Parkinson’s. For one, it plans to develop a project model to assess how specific actions — such as a ban on chemicals associated with Parkinson’s or federal approval of a disease-modifying treatment — would affect the economic burden.

The post At $52B Per Year, Economic Burden of Parkinson’s in U.S. Double Previous Estimates, Study Reports appeared first on Parkinson’s News Today.

PatientPoint Launches Digital Support Network for Neurologists, Patients, and Caregivers

PatientPoint

PatientPoint, in collaboration with five U.S. patient advocacy organizations, has introduced a technology-driven point-of-care network for neurologists, neurology patients, and caregivers.

With a focus on neurological conditions such as Parkinson’s and Alzheimer’s disease, the comprehensive network hopes to promote improved communication between patients and physicians.

The new patient empowerment network, targeting the estimated 100 million U.S. residents with neurological diseases, emphasizes everyday living, symptom management, treatment regimens, advice for caregivers, and tailored content in physicians’ offices, and waiting and exam rooms. By year’s end, the network is expected to reach some 1,000 neurologists nationwide.

“We know that education can help decrease anxiety and provide a sense of control,” Kate Merz, executive vice president of content and creative of PatientPoint, said in a press release. “With that in mind, the inspiring and educational content offered on our new neurology network is designed to help patients live their best lives.”

Aiming to improve doctor-patient engagement, PatientPoint has established partnerships with the Parkinson’s Foundation, the Alzheimer’s Association, the International Essential Tremor Foundation, Migraine Again, and the National Multiple Sclerosis Society. Across the PatientPoint platform, the organizations will provide essential tools and educational information to all individuals involved or affected by neurological conditions.

“At PatientPoint we put the patient-doctor relationship at the center of everything we do, and our neurology network is no exception,” said Mike Collette, founder and CEO of PatientPoint. “We conducted extensive research in developing this new network, and we are confident that the resulting blend of empowering health education, lifestyle and partner content will meet the unique needs of neurology patients, and drive doctor-patient engagement in an important new medical specialty.”

For the neurology examination room, for example, diagnoses can be more clearly communicated through interactive touchscreens that offer condition-precise multimedia education and three-dimensional human body images. To further communication beyond doctor visits, touchscreen content also can be emailed and texted.

The new network also features back-office digital screens that can keep physicians and staff apprised on a host of topics, including real-time breaking news, industry trends, practice management, and self-care.

In addition to the neurology network, PatientPoint offers engagement networks in other specialties, including cardiology and primary care.

The Michael J. Fox Foundation for Parkinson’s Research estimates that, by next year, nearly 1 million Americans over age 45 will be diagnosed with the disease.

The post PatientPoint Launches Digital Support Network for Neurologists, Patients, and Caregivers appeared first on Parkinson’s News Today.