At the Parkinson's Foundation, one of the ways we make life better for people living with Parkinson’s disease (PD) is through research. Every day, your generous donations help us fund cutting-edge PD research initiatives and support scientists working on the causes and treatments for Parkinson’s that could one day lead to a breakthrough.
In this Neuro Talk, our Chief Scientific Officer, James Beck, PhD, walks us through the research we’re supporting right now and how your support goes a long way at the Parkinson's Foundation.
Neuro Talk: Myths and Realities of Parkinson's Disease
Does Parkinson’s disease (PD) only affect movement? Can doctors predict its progression? Can stem cells cure Parkinson’s? In this Neuro Talk, our Chief Scientific Officer, James Beck, PhD, debunks seven common myths about Parkinson's disease.
Quarantine Playlist: Our Most Popular Podcast Episodes
As coronavirus continues to impact our daily life, we are committed to providing you with the latest updates and ways you can stay engaged with the Parkinson’s community. While you practice social and physical distancing, exercise your brain with our podcast playlist.
The Parkinson’s disease (PD) community often hears that exercise is crucial to living a healthy live with PD, but why does fitness make such an impact? Bas Bloem, MD, breaks down the science behind its benefits to those with PD and how to get started.
In our first podcast episode, Michael Okun, MD, discusses the early signs of Parkinson’s and practical steps to take after the life-changing diagnosis.
Finding the right PD medication balance is often an unpredictable and sometimes frustrating. Irene Malaty, MD, discusses “off” time, what causes it and how it can be managed.
What we put into our bodies is always important, but especially when it comes to people with PD. Can symptoms be managed through what we eat? Can our diet improve the effects of our medications?
Medical marijuana is a hot topic in the PD community for its possible effect on easing PD symptoms such as pain, anxiety, sleep and nausea. Danny Bega, MD, sheds light on the subject.
Driving and Parkinson’s can be a difficult conversation. Lissa Kapust, creator of DriveWise, speaks about driving with Parkinson’s, assessments and making the complicated decision.
Parkinson’s is more than movement symptoms. Non-movement symptoms often go under-reported because many find them too embarrassing to discuss. Tanya Gurevich, MD, discusses sexual health and common solutions to autonomic problems.
We are devoted to the health and wellbeing of the PD community. For our latest information on the coronavirus and Parkinson’s visit Parkinson.org/Coronavirus.
Parkinson’s disease (PD) is now the world’s fastest growing brain disorder, even faster than Alzheimer’s. Ten million people live with Parkinson's world-wide. Over the past 25 years, the number of people with Parkinson’s has more than doubled. At this current rate, the number will double again in the coming generation. In the U.S., the number of Americans with the condition has increased by 35% in the last 10 years alone. We must act to stop Parkinson’s disease.
Four authors (three PD specialists and a neuroscientist) wrote a book called Ending Parkinson’s Disease that highlights the rise of the disease, the factors contributing to the increase and what steps we can take together to help end the disease.
Our prescription for action includes a “PACT” that details steps we can do to:
1. Prevent the disease
Several environmental factors, including air pollution, heavy metals, certain pesticides, and industrial chemicals like trichloroethylene are linked to PD. One pesticide called paraquat more than doubles the risk of developing Parkinson’s disease, kills the weeds that RoundUp cannot and has been banned by 32 countries, including China. Yet, use in the U.S. has doubled in the past decade. Despite a petition signed by more than 100,000 members of the Parkinson’s community, the U.S. Environmental Protection Agency has failed to act. We need to ban this pesticide and take other actions to minimize the risk of Parkinson’s disease from the foods we eat, the water we drink and the air we breathe.
2. Advocate for better policies and resources
In addition to better environmental policies, to end Parkinson’s disease will require additional resources. The National Institute of Health (NIH) funds $3 billion per year to enhance our understanding of HIV. This research has likely prevented millions, including many of us from ever developing the disease and led to numerous treatments that now makes a HIV a chronic, rather than rapidly fatal condition. By contrast the NIH funds less than $200 million per year for Parkinson’s disease. We need to change that.
3. Care for all affected
Many individuals with Parkinson’s do not see a neurologist or specialist for PD. Those who do not are more likely to fracture their hip or be placed in a skilled nursing facility. Expert care models, like ParkinsonNet developed by Bas Bloem, MD, and his colleagues, telemedicine and Centers of Excellence can provide better care to almost anyone anywhere. We need to embrace such models and ensure that Medicare, supported by taxpayers like you, does the same.
4. Treat the disease with novel therapies
The most effective medication for Parkinson’s remains a 50-year-old drug, levodopa. While effective, it does not address the underlying disease and has its own complications. To develop a new generation of therapies aimed at the underlying pathology of the disease, we need better, objective measures of the disease and to support efforts to develop gene-targeted therapies. The PD GENEration study and other efforts can help individuals better understand their genetic risk of the disease. Additional surgical interventions can also advance our treatment of those already affected by the disease.
All of these will require the collective action of all us. The same collective action that changed the course of polio through a March of Dimes and the course of HIV through a Quilt that covered the National Mall. We hope that the book will help catalyze such action and we look forward to your thoughts and suggestions.
The coronavirus pandemic quickly changed our day to day lives and has given rise to an increase in healthcare appointments being administered through telemedicine (the distribution of health-related services and information using technology).
“There are advantages to telemedicine, and right now considering the COVID-19 pandemic, telemedicine is an excellent way to connect to your physician and avoid the spread of the virus social distancing.”
Telemedicine appointments can be completed using a laptop, computer, tablet or phone with a camera, often through an app or program using an internet connection. Telemedicine appointment benefits include easy access to healthcare professionals, and no transportation hassle or waiting rooms. Below are nine tips to help you prepare for your next telemedicine appointment:
Preparing for your telemedicine appointment:
Get ready. Prepare as you would for an in-person visit. Make sure you have your medication list handy and write your list of questions you would like to ask.
Medication check. Check to see if you have enough pills at home or if you need refills. Remember, try to have a 90-day supply on-hand during quarantine.
Communication program check. Download the technology/application your physician is using for the call ahead of time. You will most likely use a program such as, Epic, Zoom, FaceTime, Skype or others. Your provider will let you know which program to download.
Device preparation. Make sure you set up in a location with a good internet connection. Charge your device before the appointment starts or try to keep it plugged in.
Be ready to move. Try to position yourself near a space where you can perform typical tasks your doctor or specialist may ask you to complete. For instance, a movement disorders specialist or physical therapist may ask you to walk. It may be helpful to have a family member ready to help during the appointment.
Final touches. Have a paper and pen nearby, along with any items your healthcare specialist may have asked you to bring to your appointment (for instance, a thermometer).
Video Tips:
Limit any clutter between you and the camera
Avoid backlighting (like windows behind you)
Limit background noise that may come from a TV, radio, pets or affect your device’s microphone (a fan overhead, loud AC unit, open window)
Speak in your normal voice
Do not place papers or objects near the microphone. If you are not using your cell phone, place it away from your device.
Ask your questions. Take notes and add them to your medical file.
Provide updates. Your pharmacy, insurance or contact information may have changed. Let the doctor’s office know before your appointment ends.
Are my Parkinson’s-related telemedicine appointments covered under Medicare?
The Centers for Medicare and Medicaid Services (CMS) provides coverage for various telehealth appointments. In response to the coronavirus pandemic, CMS expanded coverage to more hospitals', physicians’ and other healthcare organizations’ Medicare coverage of telehealth visits ― including emergency department visits, physical therapy and occupational therapy appointments. View the full list on the CMS.gov here.
PD Health @ Home features new weekly Parkinson’s disease (PD) wellness and education virtual events designed for the PD community. We have new, exciting upcoming events scheduled that help promote mindfulness, highlight COVID-19 issues, exercise classes and more. Remember to join us and catch up on previous virtual events now.
These are the top 10 most popular PD Health @ Home episodes YOU found to be the most helpful:
1. Emotional Stress, Mindfulness Meditation and Mindful Movement
In this Mindfulness Monday, we introduce you to mindfulness and discuss the role emotional stress plays on the brain. Event recorded April 6.
3. Expert Briefing: PD and Medication: What’s New?
In this Expert Briefings Tuesday event, Fernando Pagan, MD, highlights the latest PD medications and what is next in Parkinson’s treatments. Event recorded April 14.
In this Expert Briefing Tuesday, we highlighted the changes that can occur in thinking and memory for people with Parkinson’s and their care partners and the steps you can take to reduce the effects these symptoms might have. Event recorded April 7.
5. Ask the Expert: How Can I Benefit from Telemedicine?
In this Wellness Wednesday, Roy Alcalay, MD, explains what to expect from a telehealth appointment, the benefits of telemedicine and provides helpful tips for your next appointment.
In this Wellness Wednesday, Dr. Okun reviews hospital safety for people with Parkinson’s who may be experiencing COVID-19 symptoms and answers questions from our Facebook community. Event recorded April 8.
8. Overcome Exercise Apathy with Live Fitness Demos
In this Take Time Thursday, we help you break some exercise apathy habits while at home and show you some exercises that get you out of your chair. Event recorded April 23.
In this Fitness Friday, Physical Therapist Joellyn Fox leads you through our PD-tailored at-home fitness class. This session will help you improve your posture through seated stretching and core exercises. Event released April 10.
In this Fitness Friday, Joellyn Fox will guide you through exercises that can help improve arm strength, highlighting correct form, chair and standing exercises. Event released April 24.
The second most common neurodegenerative disorder after Alzheimer’s disease, Parkinson’s disease (PD) affects approximately one million Americans. Scientists are working toward discoveries to prevent or slow the disease early on, before it affects movement. Breakthrough studies include genetic research that could lead to targeted PD therapy. In the meantime, experts are finding ways to boost the effectiveness of existing medications, and introducing new motor and non-motor symptom treatments nearly every year.
Simply put, medication can help people better manage Parkinson’s symptoms. Before carbidopa/levodopa (brand name SINEMET®) ― long successful in lessening motor symptoms ― was introduced in the 1960s, the lifespan of people with PD was well below that of the general population. After its discovery, people with PD’s life expectancy equaled that of the general population. Studies show treating Parkinson's improves life for those living with PD ― increasing lifespan and reducing symptoms.
An Introduction to PD Medication
Not too long ago, medication options were limited; doctors often postponed treatment to delay medication-associated side effects. Today more than 30 medication options are available. Working with your doctor to try to find the right medicine combination for you is key.
Those with mild PD symptoms may wonder when beginning treatment makes sense. Research shows earlier detection, treatment and expert care helps people with Parkinson’s live well longer.
Many Parkinson’s symptoms are due to lack of dopamine in the brain. Dopaminergic medications include levodopa and dopamine agonists. These either briefly replenish dopamine or mimic its action. Other neurotransmitters are also involved in PD, including acetylcholine, serotonin and norepinephrine. Newer treatments to modulate these can improve different PD symptoms.
Carbidopa/levodopa formulations
Levodopa, the most effective PD treatment, converts to dopamine in the brain. Carbidopa enhances levodopa ― preventing nausea and helping more levodopa get to the brain, so less medication is needed.
Drug manufacturers prepare Levodopa differently ― including a variety of strengths, immediate or controlled-release and liquid form. Some preparations are designed to address specific challenges, such as Parkinson’s-related gastrointestinal (GI) issues, which can interfere with medication absorption.
Immediate and controlled-release carbidopa/levodopa tablets can be used alone or in combination with other medications to improve slowness, stiffness and tremor in Parkinson’s.
Long-acting extended release carbidopa/levodopa, IPX066/Rytary, contains beads designed to dissolve at different rates, giving users longer lasting benefits.
Carbidopa/levodopa enteral suspension – (CLES or DUOPA™) – is delivered into the small intestine improving absorption and reducing “off” times.
Levodopa inhalation powder INBRIJA™ is an add-on drug for “off” periods in people taking carbidopa/levodopa. Administered via inhaler, it bypasses the GI system. It can be used up to five times a day, improving “off” symptoms for people with decreased gut motility while waiting for oral carbidopa/levodopa to take effect.
Dopamine agonists
These medications come in a variety of formulations to supplement or boost the action of levodopa. Compulsive behaviors can be a side effect.
Dopamine agonist rotigotine transdermal patch (NEUPRO®) delivers medication through the skin, directly into the bloodstream.
One of the oldest and most potent on-demand dopamine agonists, apomorphine, is administered via injection, delivering “on” time within about 10 minutes. Still in clinical trials is sublingual apomorphine. Dissolved under the tongue, it can relieve “wearing off” episodes for people with Parkinson’s disease in 15 minutes.
Currently only available in Europe, subcutaneous apomorphine treatment offers a less invasive motor fluctuation treatment option. A small delivery tube placed under the skin is connected to an apomorphine-filled pumping device. It can reduce daily “off” time and possibly dyskinesia by reducing needed levodopa dose. Those with hallucinations and dementia might not be candidates.
COMT inhibitors
COMT (catechol-o-methyl transferase) inhibitors, used with levodopa, ease “wearing off” symptoms and extend “on” time by blocking levodopa breakdown. The three COMT categories include:
MAO-B (monoamine oxidase type B) inhibitors also block dopamine breakdown, and can be used as monotherapy in early Parkinson’s. As PD progresses, it may be used as an add-on to other medications. Forms include:
selegiline
rasagiline
safinamide
Anticholinergics
Anticholinergics reduce tremor by blocking overactivity of acetylcholine, a neurotransmitter regulating movement. Younger patients often better tolerate these treatments due to potential side effects, including dry mouth, constipation and hallucinations. Types include benztropine and trihexyphenidyl HCL.
Amantadine
An early Parkinson’s drug, amantadine was originally developed as an antiviral agent. It was found to also improve PD tremor, rigidity and dyskinesia. Delivery is improved in new, long-acting forms of this drug. GOCOVRI® ER amantadine capsules treat dyskinesia and “off” time in people with PD taking carbidopa/levodopa. This must be taken before bedtime and provides control of dyskinesia upon awakening and throughout the day.
A2A antagonist
A brain circuit group called the basal ganglia play a role in PD symptoms. The basal ganglia have adenosine A2A receptors that are located next to dopamine receptors. Scientists have found activating the dopamine receptor or blocking the adenosine A2A receptor can improve PD symptoms.
Istradefylline, an adenosine A2A receptor antagonist improves motor symptom fluctuations. It received U.S. FDA approval in 2019.
Managing Non-motor Symptoms
Non-motor symptoms are common in Parkinson’s and can be more challenging than motor symptoms. There are many management medications available.
Orthostatic hypotension
About one-third of people living with PD experience a significant blood pressure drop upon standing, known as orthostatic hypotension; certain medications can worsen this. This drop can cause lightheadedness or fainting, and other symptoms.
Droxidopa (NORTHERA®) treats lightheadedness. It should not be taken within five hours of bedtime. Side effects include headache, dizziness, nausea, fatigue and high blood pressure when lying down.
Psychosis
Confusion, hallucinations and delusions can be experienced by up to 70 percent of people living with Parkinson’s. The disease itself or PD medications can cause PD-associated psychosis.
The newest treatment, pimavanserin (NUPLAZID®), does not block dopamine or worsen motor symptoms. It can improve hallucinations, delusions, night-time sleep and daytime sleepiness. Side effects include nausea, confusion and hallucinations. Older options have treatment shortcomings.
Clozapine (Clozaril) requires weekly blood tests, and though quetiapine prescribed off-label hasn’t been shown effective across several randomized Parkinson’s disease clinical trials many Parkinson experts believe it is helpful for hallucinations.
Drooling
The FDA recently approved the botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) to treat sialorrhea, or drooling, a common Parkinson’s symptom. MYOBLOC is also be used to treat PD-related sustained cramping, or dystonia.
Rivastigamine
The rivastigmine (Exelon®) patch, a treatment for Alzheimer’s, can improve mild cognitive impairment or dementia in Parkinson’s. Donezepil (Aricept) can also be used.
Sleep disorders
PD-related brain changes can cause sleep challenges. People with rapid eye movement sleep behavior disorder (RBD) do not have normal muscle relaxation while dreaming, causing them to act out dreams during REM sleep. Clonazepam and melatonin can be used to improve symptoms.
Surgical Interventions
This multi-procedure surgery inserts electrodes into a motor-function targeted brain area; an implanted impulse generator battery then stimulates this area with electrical impulse to improve “on” time. Users are given a DBS control device. Manufactures Abbott, Boston Scientific and Medtronic have all made recent improvements to these devices.
More Resources
Check out more Parkinson’s Foundation resources about medication now:
Aware in Care Ambassadors played a key role in helping the Parkinson’s Foundation distribute 100,000 Aware in Care kits. We recently interviewed Ambassadors Patsy and David Dalton from Columbia, MO, how they help us spread awareness and advocate for people with Parkinson’s disease (PD) when hospitalized using the free Aware in Care kit. Together, they educate support groups, health professionals, Centers of Excellence, care partners and people with Parkinson’s.
Q. How do you help people with Parkinson’s prepare for the possibility of hospitalization?
A. Twenty-six years ago, David was diagnosed with Parkinson’s and we decided to start a support group. Now we facilitate two groups that meet monthly, one with nearly 100 members. We have learned that we all need each other's support. Preparing for the scary prospect of a hospitalization was greatly assisted nine years ago when the Aware in Care kit was first introduced. Now, as Ambassadors, we always re-introduce the kit to support group members to prepare them how to talk to hospital staff about their vital need to have their PD medications on time, every time.
Q. What are “Aware in Care Moments?”
A. Since we believe that repetition is key to bringing home the Aware in Care message, we share an "Aware in Care Moment" at each monthly meeting, which addresses key points. Our Aware in Care expert educators address different topics each month in our support group. We want to make our meetings entertaining, while still educational!
Q. What advice would you give someone who is hesitant to share the kit with hospital staff?
A. It's a good idea to broach any topic with a smile and an air of cooperation. Then just tell it like it is: "This hospital stay's success is going to depend on me getting my Parkinson's meds on time, every time. Research shows that things can go wrong if I don't get my medication on my prescribed schedule. We all know that Parkinson's is a different disease for every person, and so is our medical treatment." Just keep thinking to yourself, "This is my life at stake, this staff is here to ensure my well-being and I'm going to educate them on my care and the care of their future patients living with Parkinson’s!" Be strong, be bold and speak up.
Q. We know that you use the “Health” app in your phone to complement the information provided by your kit. Can you tell us how?
A.Since we never know when an emergency can strike, it's a huge help to have Aware in Care information on your phone. It's a great backup plan is you are headed to the hospital without your kit. If you're unconscious when emergency responders are on site, they're trained to check your smart phone to find this information. It's kind of like having a medical alert bracelet, except it's on your phone. A quick tip: When you have a medication change, be sure to update your medication form AND the meds section of your smart phone health app!
Q. What component of the Aware in Care kit do you find most helpful?
A.We love the Hospital Action Plan because it completely explains the Aware in Care program and the kit. It explains the six steps to optimum care, a checklist for a planned hospital stay and for an emergency situation. Special considerations are also included in the plan, along with tips on how we can make hospitals safer for people with PD. The back cover also has a great summary of medications that may be contraindicated in PD.
Special Note on hospitalization with PD and Coronavirus
Medical Cannabis Convening Findings: Top Takeaways and Guidance
Many people with Parkinson’s disease (PD) have looked to medical cannabis (marijuana) to provide some relief to their range of non-motor and motor symptoms. However, little is known about the effects of medical cannabis for PD symptoms or their potential side effects and safety issues. To address this, the Parkinson’s Foundation published a statement to help guide the PD community in making informed decisions about using cannabis for Parkinson’s.
The statement is based on the input from experts who attended the Parkinson’s Foundation first-ever medical marijuana convening in March 2019. These 46 experts included neurologists, scientists, a pharmacist, a PD nurse, non-profit organizations, people with Parkinson’s and Foundation staff.
The primary goal of the statement is to provide guidance to people with Parkinson’s and their physicians for the safe use of medical cannabis for PD. The secondary goal is to establish cannabis and PD topics that should be addressed through rigorous research studies.
Regardless of whether a medical cannabis product is approved for Parkinson’s in the future, this statement will help to inform that it is used in the safest, most effective way possible.
Top Takeaways on the Use of Medical Cannabis for PD
Our experts urge caution. There are adverse effects, toxicity issues and drug to drug interactions, and we do not fully know what this means for people with PD who are taking PD medications.
We cannot endorse the use of medical cannabis for PD symptoms or disease progression because we need more data. However, because we realize that people with PD are interested in cannabis, we feel it is necessary to provide guidance for general safety as well as working with dispensaries.
We need better studies. Some studies have suggested cannabis may be beneficial for non-motor symptoms such as sleep disturbances, pain, anxiety and gastrointestinal issues. However, these studies are generally small and are not conducted the most reliable kind of research studies.
Guidance for Using Cannabis for Parkinson’s
Without any clear data supporting the use of cannabinoid products in PD, while the Parkinson’s Foundation does not endorse their use in PD, we recognize that people may decide to try cannabinoid products for certain symptoms. If you decide to try cannabinoid products:
What is CBD?
Cannabidiol (CBD) and hemp products (defined as having less than 0.3% tetrahydrocannabinol - THC) are legally available in all 50 states.
Discuss the use of cannabinoid products with your healthcare providers. These products may interact with other medications or cause side effects that could influence your PD care.
Treat cannabis products as you would any new medication. Always start at a low dose and go up slowly. CBD-only products may also be less likely to cause side effects and could be considered before trying products also containing THC.
For pain in one specific area, consider creams or patches to reduce general side effects.
Be cautious when ingesting edible products, as they can have delayed side effects and increased toxicity.
Consider staying with the same dispensary. Since cannabis products are not regulated, do not assume the “dose” on a label from one dispensary will have the same effects as one obtained from a different dispensary.
Be aware of potential side effects, particularly dizziness, problems with balance, worsening motivation, dry mouth and impaired thinking and memory.
Parkinson’s Foundation Drives Research with New Patient Engagement Framework
The Parkinson’s Foundation makes research more efficient and effective by involving those living with Parkinson’s disease (PD) in the research process. People living with PD are experts because they know this disease, its symptoms and how it impacts their lives. The Parkinson’s Foundation Research Advocacy Program (formerly referred to as Patient Advocates in Research) trains research advocates ― people with Parkinson’s and care partners ― to provide their expertise to researchers in academia, government and pharmaceutical companies. Historically, there has not been a universal process in place to help researchers engage research advocates in their work. The Parkinson’s Foundation is changing that.
What is patient engagement?Patient engagement is when people with Parkinson’s and care partners work alongside scientists to design and run research studies. Patient engagement speeds up research, making it more efficient and effective.
In May 2020, the Parkinson’s Foundation published an article in the scientific journal Health Expectations outlining a patient engagement framework developed from the Foundation’s 12 years of experience working with research advocates. The framework is designed to help researchers integrate and measure patient engagement in their work, ultimately leading to better studies.
“Over the last decade the Parkinson’s Foundation has learned that there is critical information pharmaceutical companies and academia are missing by not involving people living with Parkinson’s in the research process,” said Megan Feeney, author and Parkinson’s Foundation Senior Manager of Community Engagement. “There are also many researchers open to making patient engagement a priority, but we need evidence to promote this practice.”
This framework provides a clear outline for researchers to follow. “The goal of this framework is to make patient engagement a common practice in the research process for all health conditions, whether a researcher has experience working with patients or not,” Megan said. “This patient engagement framework can be customized by any researcher for any study.”
Patient Engagement Leads to Smarter Research
Why is patient engagement important? Without patient input, research may target the wrong outcomes or design trials without consideration of the preferences of people living with Parkinson’s. In one clinical trial, people with Parkinson’s were excited to help test a new PD medication. However, the clinical trial requirements were burdensome. Due to poor recruitment and retention, the trial could not continue. Had the researchers designed a clinical trial allowing for patient engagement, it could have been more patient friendly, while enrolling and retaining study participants. Read the article for more case studies.
“When you design a clinical study with input from people living with Parkinson’s, each part of the study can be tailored for the community you are trying to help without impacting the quality of the science, making research faster and better,” Megan said. The patient engagement framework is now available for all organizations to utilize and tailor to their needs to expedite research and make it relevant to their community.
Parkinson’s and Beyond
Not every organization has a patient engagement process in place, like the Parkinson’s Foundation. Parkinson’s is a complex disease with multiple symptoms (non-movement and movement) that can make the patient engagement process difficult to navigate without the proper planning and resources. The Foundation works to mediate patient engagement so that both people living with Parkinson’s and researchers can contribute and have a positive experience.
“We work with researchers and other patient advocacy organizations all over the world to overcome the challenges that people might experiences when engaging with patients for the first time,” said Karlin Schroeder, co-author and Parkinson’s Foundation Senior Director of Community Engagement. “The ultimate goal is to create an environment for success that helps the most people possible.”
The Parkinson’s Foundation will continue to use its patient engagement framework, helping people with Parkinson’s become empowered to fight this disease through active involvement. “We hope this framework can become a blueprint, reaching beyond Parkinson’s so other patient advocacy groups can utilize this model for other life-impacting diseases and increase patient engagement for the greater good,” Karlin said.
If you are interested in becoming a research advocate or working with research advocates, please email Karlin Schroeder at KSchroeder@Parkinson.org.
Read the full article online “Utilizing Patient Advocates in Parkinson’s Disease: A Proposed Framework for Patient Engagement and the Modern Metrics that Can Determine Its Success in Health Expectations” in Health Expectations.
