Increasing Hispanic Representation In Parkinson’s And Genomic Research
Human genetics and epidemiological studies are valuable tools for understanding Parkinsons disease, but research has found that known genetic factors identified in European populations play an insignificant role in the development of PD in Latinos. LARGE-PD, an ASAP partner and multicenter collaboration across Latin America, is working to increase Latino and Hispanic representation in this field of research. Read GP2s latest blog post.
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Slice Titleparkinson’s Uk Bursary For Health And Social Care Professionals
This bursary has been offered to Parkinson’s UK for application by health or social care professionals who want to attend a conference or undertake training and need some financial assistance. The bursary can be used to cover conference or course fees, travel or accommodation.
You can apply for this bursary towards the cost of a ticket for the Excellence Network Conference.
Scotland
Funding for health and social care professionals in Scotland has been made available by the J. MacDonald Menzies Charitable Trust to the Rosemary Maguire Educational Bursary.
There are a number of funding opportunities available via the Royal College of Occupational Therapists to support members’ education, research and CPD activities.
The British Dietetics Association General and Education Trust Fund Trust Fund exists to advance education and other charitable purposes related to the science of dietetics.
The British Geriatrics Society , as part of its charitable activities, administers a number of grants, prizes and awards with a view to encouraging high quality research and furthering the development of professionals with an interest in older people’s healthcare.
The British Geriatrics Society offers a limited number of grants to trained nurses with a special interest in the care of elderly people to attend meetings and/or to visit services with an innovative approach.
The grants are available to trained nurses and to nurses still in training irrespective of professional affiliation.
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What Is The Expected Impact Of This Project
This project will establish palliative care as a core service at Parkinson Foundation Centers of Excellence, consistent with the foundations goals for patient care.
At least 54,000 patients will receive team-based palliative care during the project. All centers have committed to sustaining the program after the project ends. The evaluation will confirm that the program is working as intended at these centers to improve patients quality of life.
Why Do We Do It
Our mission is to provide financial support to local nonprofits and institutions dedicated to improving the quality of life for people with Parkinsons disease , their families, and care-partners. Compassionate dedication is the core value we live by. And our vision is to touch the lives of people with Parkinsons disease every day. It is also our mantra.
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Towards A Cure And Improving Life
We are focused on finding new and better treatments for Parkinson’s, and one day a cure. And we’re investing in big ideas that will speed up the research process and deliver treatments to the people who need them faster.
This can include research into Parkinson’s Plus – conditions that share some aspects of Parkinson’s, such as multiple system atrophy and progressive supranuclear palsy .
We’re also keen to fund research that improves quality of life in the shorter term, particularly in our research priority areas.
Complementary And Supportive Therapies
A wide variety of complementary and supportive therapies may be used for PD, including:
A healthy diet. At this time there are no specific vitamins, minerals, or other nutrients that have any proven therapeutic value in PD. The National Institute of Neurological Disorders and Stroke and other components of the National Institutes of Health are funding research to determine if caffeine, antioxidants, and other dietary factors may be beneficial for preventing or treating PD. A normal, healthy diet can promote overall well-being for people with PD just as it would for anyone else. Eating a fiber-rich diet and drinking plenty of fluids also can help alleviate constipation. A high protein diet, however, may limit levodopas absorption.
Exercise. Exercise can help people with PD improve their mobility, flexibility, and body strength. It also can improve well-being, balance, minimize gait problems, and strengthen certain muscles so that people can speak and swallow better. General physical activity, such as walking, gardening, swimming, calisthenics, and using exercise machines, can have other benefit. People with PD should always check with their doctors before beginning a new exercise program.
Alternative approaches that are used by some individuals with PD include:
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What Will This Project Do
The project team is rolling out the program as part of standard care at 34 medical centers designated as Centers of Excellence by the Parkinsons Foundation. The centers vary in size, type, staffing, and resources to support staff. The centers serve diverse patient populations.
The project team is working with staff at the centers to put the program in place. The team is
- Helping centers develop palliative care teams, which include a neurologist, nurse, social worker, chaplain, and primary care doctor
- Adapting patient screening and other processes for each center
- Adapting clinician checklists and other materials as needed
- Training staff at the centers and providing ongoing coaching, support, and feedback
Student Grants And Conference Awards
BW Fallis Parkinsons Care Research Grant
Deadline: April 15
This grant provides funding for both qualitative and/or quantitative research examining the physical and/or psychosocial aspects of Parkinsons disease . This includes but is not limited to projects aimed at improving quality of life and care for persons living with Parkinsons or their families, examining ethical issues that arise during the care of people living with PD, increasing understanding and treatment of non-motor and motor symptoms of PD, addressing issues related to family caregiving, and facilitating access to services and supports for people living with Parkinsons disease and their families. Research can focus on any phase of the illness trajectory of Parkinsons disease from early diagnosis to end-of-life care. Biomedical and/or bench research in Parkinsons disease is not eligible for this funding opportunity. There is one award of $4,500 available annually.
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What Are The Symptoms Of The Disease
The four primary symptoms of PD are:
- Tremor. Tremor often begins in a hand, although sometimes a foot or the jaw is affected first. The tremor associated with PD has a characteristic rhythmic back-and-forth motion that may involve the thumb and forefinger and appear as a pill rolling. It is most obvious when the hand is at rest or when a person is under stress. This tremor usually disappears during sleep or improves with a purposeful, intended movement.
- Rigidity. Rigidity , or a resistance to movement, affects most people with PD. The muscles remain constantly tense and contracted so that the person aches or feels stiff. The rigidity becomes obvious when another person tries to move the individuals arm, which will move only in ratchet-like or short, jerky movements known as cogwheel rigidity.
- Bradykinesia. This slowing down of spontaneous and automatic movement is particularly frustrating because it may make simple tasks difficult. The person cannot rapidly perform routine movements. Activities once performed quickly and easilysuch as washing or dressingmay take much longer. There is often a decrease in facial expressions.
- Postural instability. Impaired balance and changes in posture can increase the risk of falls.
Accelerating Medicine Partnership In Parkinsons Disease
The Accelerating Medicines Partnership program for Parkinsons disease has launched a data portal to provide de-identified information collected from 4,298 PD patients and healthy controls to researchers working to develop effective therapies for the disease. The portal enables researchers to study complex data sets and perform genome-wide analyses at a scale previously impossible.
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Establishing Pd Research Priorities
The NINDS-organized Parkinsons Disease 2014: Advancing Research, Improving Lives conference brought together researchers, clinicians, patients, caregivers, and nonprofit organizations to develop 31 prioritized recommendations for research on PD. These recommendations are being implemented through investigator-initiated grants and several NINDS programs. NINDS and the NIHs National Institute of Environmental Health Sciences held the Parkinsons Disease: Understanding the Environment and Gene Connection workshop to identify priorities for advancing research on environmental contributors to PD.
Research recommendations for Lewy Body Dementia, including Parkinsons disease dementia, were updated during the NIH Alzheimers Disease-Related Dementias Summit 2019 .
Yale Researchers Receive Asap Grant To Study Cognitive Impairments Of Parkinsons Disease
A team of researchersincluding Yale School of Medicines Thomas Biederer, PhD, associate professor of neurology, who is the coordinating lead investigator Elena Gracheva, PhD, associate professor of cellular and molecular physiology and of neuroscience and Michael Higley, MD, PhD, associate professor of neurosciencehas been awarded funding through the Aligning Science Across Parkinsons initiative. The $9 million grant will support work to understand cognitive impairments in Parkinsons disease. The team also includes Danielle Bassett, PhD, professor of bioengineering at the University of Pennsylvania, and Michael Henderson, PhD, assistant professor of neurodegenerative science at the Van Andel Research Institute.
ASAP is dedicated to advancing research studies and treatments of Parkinsons. Its mission is to accelerate discovery through supporting highly collaborative teams and providing resources for the field including data sharing. The Michael J. Fox Foundation for Parkinsons Research is working with ASAP as its implementation partner and issues grants through its Collaborative Research Network.
Specifically, the team will study how pathology progression impacts the cortex, which is where all critical cognitive functions occur. We want to understand how cortical connectivity becomes impaired as Parkinsons progresses. Based on this knowledge, we will manipulate vulnerable network points to restore circuit functions underlying cognitive processing, says Biederer.
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Announcing The Newest Members Of The Crn
The ASAP Collaborative Research Network continues to expand, attracting new investigators across multiple disciplines, institutions, career stages, and geographies. Working together, the CRN addresses gaps in the development and progression of Parkinsons disease. This year, we welcome 14 new research teams who will focus their work on circuitry and brain-body interactions.
What Genes Are Linked To Parkinsons Disease
Several genes have been definitively linked to PD:
- SNCA. This gene, which makes the protein alpha-synuclein, was the first gene identified to be associated with Parkinsons. Research findings by the National Institutes of Health and other institutions prompted studies of the role of alpha-synuclein in PD, which led to the discovery that Lewy bodies seen in all cases of PD contain clumps of alpha-synuclein. This discovery revealed the link between hereditary and sporadic forms of the disease.
- LRRK2. Mutations in LRRK2 were originally identified in several English and Basque families as a cause of a late-onset PD. Subsequent studies have identified mutations of this gene in other families with PD as well as in a small percentage of people with apparently sporadic PD. LRRK2 mutations are a major cause of PD in North Africa and the Middle East.
- DJ-1. This gene normally helps regulate gene activity and protect cells from oxidative stress and can cause rare, early forms of PD.
- PRKN . The parkin gene is translated into a protein that normally helps cells break down and recycle proteins.
- PINK1. PINK1 codes for a protein active in mitochondria. Mutations in this gene appear to increase susceptibility to cellular stress. PINK1 has been linked to early forms of PD.
- GBA . Mutations in GBA cause Gaucher disease , but different changes in this gene are associated with an increased risk for Parkinsons disease as well.
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Key Programs And Resources
The Parkinsons Disease Biomarkers Programs , a major NINDS initiative, is aimed at discovering ways to identify individuals at risk for developing PD and Lewy Body Dementia and to track the progression of the disease. It funds research and collects human biological samples and clinical data to identify biomarkers that will speed the development of novel therapeutics for PD. Goals are improving clinical trials and earlier diagnosis and treatment. Projects are actively recruiting volunteers at sites across the U.S. NINDS also collaborates with the Michael J. Fox Foundation for Parkinsons Research on BioFIND, a project collecting biological samples and clinical data from healthy volunteers and those with PD. For more information about the PDBP and how you can get involved, please visit the PDBP website.
The NINDS Morris K. Udall Centers of Excellence for Parkinsons Disease Research program supports research centers across the country that work collaboratively to study PD disease mechanisms, the genetic contributions to PD, and potential therapeutic targets and treatment strategies.
The NINDS Intramural Research Program conducts clinical studies to better understand PD mechanisms and develop novel and improve treatments.
The NINDS Biospecimens Repositories store and distribute DNA, cells, blood samples, cerebrospinal fluid, and autopsy tissue to PD researchers around the world.
Institutional Mds Fellowship Awards
Train neurologists to become experts in PD care and research
- Cleveland Clinic Foundation, Cleveland, OH – Hubert Fernandez, MD. Read more.
- The Trustees of Columbia University in the City of New York, NY – Blair Ford, MD. Read more.
- University Health Network, Toronto, Ontario, Canada – Susan Fox, BM, PhD. Read more.
- University of Florida Foundation, Inc., Gainesville, FL – Christopher Hess, MD. Read more.
- Johns Hopkins University School of Medicine, Baltimore, MD – Alexander Pantelyat, MD. Read more.
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A Call To Action: Promoting Diversity Equity And Inclusion In Parkinsons Research And Care
Article type: Position Paper
Authors: Siddiqi, Bernadette * | Koemeter-Cox, Andrew
Affiliations: The Michael J. Fox Foundation for Parkinsons Research, New York, NY, USA
Correspondence: Correspondence to: Bernadette Siddiqi, MA, The Michael J. Fox Foundation, 111 W 33rd Street, 10th, Floor, New York, NY 10120, USA. Tel.: +1 212 509 0995 E-mail: .
Keywords: Health disparities, minority health, The Michael J. Fox Foundation, research diversity, health equity, Parkinsons research, clinical research, research participation, research Inclusivity, Parkinsons disease
DOI: 10.3233/JPD-212593
Journal: Journal of Parkinson’s Disease, vol. 11, no. 3, pp. 905-908, 2021
Abstract
Health disparities exist between many different groups and for a multitude of reasons . Structural inequalities and systemic discrimination work with more proximal determinants of health leading to different incidences of disease, access to treatments, and outcomes for patients depending on their demographics . Parkinsons disease is no exception, due to factors intrinsic and extrinsic to the research, drug development, and healthcare ecosystems . To improve the lives of all people with PD, an aggressive strategy must be developed to address the extreme lack of representation that has thus far hampered research and care.
How Can People Cope With Parkinson’s Disease
While PD usually progresses slowly, eventually daily routines may be affectedfrom socializing with friends to earning a living and taking care of a home. These changes can be difficult to accept. Support groups can help people cope with the diseases emotional impact. These groups also can provide valuable information, advice, and experience to help people with PD, their families, and their caregivers deal with a wide range of issues, including locating doctors familiar with the disease and coping with physical limitations. A list of national organizations that can help people locate support groups in their communities appears at the end of this information. Individual or family counseling may also help people find ways to cope with PD.
People with PD may also benefit from being proactive and finding out as much as possible about the disease in order to alleviate fear of the unknown and to take a positive role in maintaining their health. Many people with PD continue to work either full- or part-time, although they may need to adjust their schedule and working environment to accommodate their symptoms.
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Uncovering The Roots Of Parkinson’s Disease Together
A global basic research initiative
Aligning Science Across Parkinsons is fostering collaboration and resources to better understand the underlying causes of Parkinsons disease. With scale, transparency, and open access data sharing, we believe we can accelerate the pace of discovery, and inform the path to a cure.
What Is Niehs Doing
NIEHS supports diverse research, involving experts from many disciplines, to uncover what may cause or help prevent Parkinsons disease. Varied methods are important because no one can predict which paths of study will provide major breakthroughs. Basic research on Parkinson’s will continue to help us advance our understanding of the disease. Highlights from NIEHS research are described below, grouped by environmental factors that may affect Parkinsons and by research approaches.
Pesticides
Mounting evidence, from animal and human studies, suggests that exposure to certain types of pesticides can increase a persons risk of developing Parkinson’s disease.
Some people are more vulnerable to the harmful effects of pesticides because of their age or genetic makeup.
- Many studies identified genetic variations that provide insight into why certain people appear to be at higher risk of developing Parkinsons.
- Using data from the NIEHS-conducted Agricultural Health Study, researchers found that Parkinson’s risk from paraquat use was particularly high in people with a particular variant of a gene known as GSTT1.5
- Similarly, other research has indicated that people with lower levels of the PON1 gene, which is important for the metabolism of organophosphate pesticides, showed faster progression of the disease.6
Trichloroethylene
Head Injuries
Air Pollution
Diet and Lifestyle
Predicting Disease
Some of the risk factors and premotor symptoms that may be involved in Parkinson’s.
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