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World Brain Day 2020 Moves to End Parkinson’s Disease

A World Federation of Neurology and International Parkinson and Movement Disorders Society Collaboration

By Tissa Wijeratne, MD, Wolfgang Grisold,MD, Claudia Trenkwalder, MD, William Carroll, MD

World Brain Day was launched in 2014. Since then, the WFN, jointly with other international societies such as International League Against Epilepsy, World Stroke Organization, and the International Headache Society, chooses a topic with a view to drive home the importance of brain health and promote better neurological care globally.

World Brain Day 2020 Key Messages

World Brain Day 2020 is a joint collaboration between the World Federation of Neurology and the International Parkinson and Movement Disorders Society (IPMDS).

Get on board today. Spread the news through mainstream media, social media platforms, national, and international meetings throughout the year.

Arrange virtual education and advocacy activities around the World Brain Day “Move Together to End Parkinson’s Disease” campaign in your community, hospital, village, city, or region throughout the year.

For ongoing support, contact Prof. Tissa Wijeratne, World Brain Day chair, at Tissa.Wijeratne@wfneurology.org.

Access the educational and promotional material created by the WFN and IPMDS to help you advocate for your patients with Parkinson’s disease.

Move Together to End Parkinson’s Disease

Based on this background, the WFN chose the topic of Parkinson’s disease jointly with the International Parkinson and Movement Disorders Society (IPMDS) as the topic for World Brain Day 2020. As in preceding World Brain Day events, the aim of World Brain Day 2020 is to alert not only its member societies, but also the public on critical neurological issues. The member societies of the WFN will receive a “toolkit” of templates for press releases and also educational PowerPoint presentation sets to assist in their local activity to promote World Brain Day and advocate for patients with Parkinson’s disease and their caregivers.

Local press conferences and press coverage, including print, electronic, radio, TV, and YouTube are strongly encouraged to reach the public.

Let us spread the key messages from World Brain Day 2020 “Move Together to End Parkinson’s Disease” through mainstream media, social media platforms, and local, regional, national, and international meetings throughout the year. Please see and share our new logo, the web banners, social media images, and other educational material in your country. We invite our readers to rally around World Brain Day 2020 “Move Together to End Parkinson’s Disease.”

Please make the World Brain Day 2020 campaign an important priority. The educational and promotional material from the WFN and IPMDS collaboration will help you to be the best advocates for your patients with Parkinson’s disease and their caregivers. •

Prof. Tissa Wijeratne is chair of World Brain Day and chair of neurology at Western Health in Melbourne, Australia.

Prof. Claudia Trenkwalder is president of the IPMDS and professor for Movement Disorders at University Medical Center in Goettingen, Germany and medical director of Paracelsus-Elena Klinik, the largest hospital for Parkinson and Movement Disorders in Kassel, Germany.

About Parkinson’s Disease

Prevalence: Parkinson’s disease is a chronic neurodegenerative brain disease that affects more than 7 million people of all ages worldwide, and its prevalence continues to increase.

Disability: Parkinson’s disease is a whole-body disease that affects the mind, movement, and almost all aspects of brain function, with symptoms worsening over time.

Standard of Care: Access to quality neurological care, life-changing treatments, and essential medication is unavailable in many parts of the world.

Research: Additional resources are needed to help unlock the cause, onset, progression, and treatment of this disease across all ages.

Advocacy: It’s important to work together to diagnose earlier, treat more effectively, and improve the lives of those living with Parkinson’s disease and their caregivers.

The 2016 Global Burden of Disease of Parkinson’s disease studied its global burden between 1996 and 2016 to identify trends and to enable necessary public health, scientific, and medical responses in 20181. Over the past generation, the global burden of Parkinson’s disease has more than doubled with potential longer disease duration and environmental factors¹. We can expect that the trend will continue in the next few decades with the possibility of 12 million patients with Parkinson’s disease worldwide by about 2050².

The comorbid diagnosis itself has not emerged as a specific risk factor for poor outcomes of COVID-19³. The hidden sorrows (potential medication supply issues, disruption to research, and clinical trials), and emerging opportunities (telemedicine, how the pandemic influences the course of Parkinson’s disease, and taking advantages of technology, such as wearable technology) have been visible during the COVID-19 pandemic^3,4.

Parkinson’s disease is a complex disease process of the human brain that results in a broad spectrum of clinical features encompassing all aspects of human function. These primarily motor dysfunctions as well as non-motor symptoms can significantly limit the patient’s ability to take part in typical day-to-day activities with poor quality of life

It is indeed essential to understand the caregiving aspects and burden in Parkinson’s disease. Findings from a published meta-analysis indicate that motor symptoms and dependence in activities of daily living have a moderate relationship with caregiver distress⁵. Non-motor symptoms such as impaired cognitive function, including hallucinations, confusion, and affective disorders such as depression and anxiety, have a significant effect on caregiver strain. It is the hours spent on caregiving activities and sleepless nights that are strongly associated with caregiver burden⁶.

References:

Collaborators, G.B.D.P.s.D., Global, regional, and national burden of Parkinson’s disease, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol, 2018. 17(11): p. 939-953.
Rocca, W.A., The burden of Parkinson’s disease: a worldwide perspective. Lancet Neurol, 2018. 17(11): p. 928-929.
Papa, SM, et al., Impact of the COVID-19 Pandemic on Parkinson’s Disease and Movement Disorders. Mov Disord, 2020.
Helmich, R.C. and B.R. Bloem, The Impact of the COVID-19 Pandemic on Parkinson’s Disease: Hidden Sorrows and Emerging Opportunities. J Parkinsons Dis, 2020. 10(2): p. 351-354.
Lau, K.-M. and A. Au, Correlates of Informal Caregiver Distress in Parkinson’s Disease: A Meta-Analysis. Clinical Gerontologist, 2011. 34(2): p. 117-131.
Bhimani, R., Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature. Rehabil Res Pract, 2014. 2014: p. 718527.

Committees of the WFN

Wolfgang Grisold,
Secretary General, WFN

Wolfgang Grisold

The committees of the WFN contribute greatly to the work of the WFN. The chairs are appointed by the trustees, and the committee is composed of members of the regions.

The present composition and membership can be seen on the WFN website and are listed in Table 1.

WFN Committees

Congress
Constitution and bylaws
e-communications
Education
Finance
Grants
Membership
Nominating
Public awareness and Advocacy
Publications
Regional liaison
Specialty groups
Standards and Evaluation

The task of the committees is to work on specific issues, and within their defined task they are of great value not only for the leadership of the WFN, but to the whole organization. This new column will introduce the committees in the next issues of World Neurology, starting with the Standards and Evaluation Committee in this issue.

Standards and Evaluation Committee

Table 1.

The most recently appointed chair is Prof. László Vécsei, head of Neuroscience Research Group, the department of neurology, University of Szeged, Hungary. He has much experience in educational matters, nationally, within the former European Federation of Neurological societies (EFNS- now EAN) and the Danube group of neurology.

This committee receives applications for meetings and also enduring materials. In the future, there will be an increasing need to endorse also webinars and virtual meetings.

The task of the committee is to scrutinize the event/material for scientific content, quality of speakers, and also make sure that the event is independent from industry or other influences. Once the event or material is endorsed, it is allowed to bear the WFN logo, as a sign of quality, and will be announced on the WFN website.

As Continuing Medical Education (CME)/ Continuous professional development (CPD) is subject to local and national regulations, the recognition of CME /CPD needs to be made locally, by the respective responsible body.

If you are planning a meeting or any other kind of virtual or enduring material, which is in English and of interest for our WFN community, please consider to have your event/material endorsed by the WFN. The WFN is free of charge and meant as a service for neurology. Details on the endorsement process, and also downloadable material for the application are on the WFN website.

Public Awareness and Advocacy Committee

This committee is chaired by Prof. Tissa Wijnerate from Australia. Its aim is to promote and enhance brain health and the visibility of the WFN. It has successfully organized previous World Brain Days. For a summary of 2019, organized with the International Headache Society, see the webinar of World Brain Day 2019.

This year’s World Brain Day is jointly organized with the International Parkinson and Movement Disorder Society. The motto is “Move Together to End Parkinson’s Disease” and will highlight the importance of treating patients with movement disorders and also support careers. See the associated article in this issue.

COVID-19 and the WFN

The WFN has set up website space for the present COVID-19 crisis. We are all concerned about the neurological effects as well as recommendations to handle this crisis.

As guidelines vary in subdisciplines and regions and countries, we have inserted a list of the websites of the global neurology alliance (GNA) as well as the WFN specialty groups. Some of them have specific guidelines and advice on their website, or could be directly asked.

The journals are presently overwhelmed with reports and observations of neurological involvement in COVID-19, and it is difficult to select peer reviewed and high quality articles. The WFN has appointed our three WFN editors (Journal of the Neurological Sciences, John England; eNeurological Sciences, Walter Struhal; and World Neurology, Steven Lewis) to go through suggested articles and give recommendations. You will find these selected articles on our website.

The Specialty Group on the Environment has published a letter in Lancet Neurology, encouraging all societies to establish databases and registries and look at neurological effects of COVID-19 (THELANCETNEUROLOGY-D-20-00339 S1474-4422(20)30148-4.)

We are also interested in suggestions and opinions concerning our committees. Please contact us via the London office (Jade), or my email at wolfgang.Grisold@wfneurology.org. •

An Open Letter to All Member Societies of the WFN

Dear Member Society,

William Carroll, MD

At this time of what we all hope is the peaking of the COVID-19 crisis, I write to assure you that the WFN remains functioning normally with none of the trustees, staff, or executives physically affected. We trust that this continues and ask that if any member society is affected adversely in any way that they think we should be aware of, or that we might be able to assist, then please contact the London Office.

For those of you who have been following our Facebook or Twitter feeds or the information on the WFN website or in the WFN newsletter, World Neurology, you will have noticed that the WFN had planned this year to ramp up its visibility, the promotion of brain health in parallel with this year’s World Brain Day, to commence the promotion of the 2021 World Congress of Neurology, and pursue and address the inequities of access to quality neurological care. Most of these activities were to combine both physical attendance at major international meetings and new press campaigns.

With the impact of COVID-19 and the uncertainty of how long this will last, we will be transferring more emphasis of these efforts to the media. The cancellation of the 2020 American Academy of Neurology, the world’s largest neurological meeting, illustrates the likely direction for other major neurological meetings.

It is paramount that neurological disorders and especially non-communicable neurological disorders do not become subsumed by the COVID-19 crisis and the response to it. In addition to providing our full support for the battle with COVID-19 by governments, their health services, institutions and hospitals, we also owe our patients with neurological disorders our reassurance and our vigilance.

Most importantly, drug supply chains, access to medicines and pre-emptive information to those receiving neuro-immunological and other treatments, as to where to find the most appropriate and up-to-date information, will be invaluable to patients in jurisdictions where such services are already fragile. Most of the major neurological disease organizations and national and regional neurological organizations have done these preparations or are making them so it may just be a matter of ensuring the information pertinent to certain member societies is available. Fortunately, COVID-19 appears not to be neurotropic, and although there has been some earlier discussion on this in the literature, there has been no firm evidence to change this view.

In closing, I wish all member societies, their individual members and their families, and above all, our patients, safe passage through this pandemic.

William Carroll
WFN President

From the Editors

By Steven L. Lewis, MD, Editor, and Walter Struhal, MD, Co-Editor

We would like to welcome all neurologists from around the globe to this issue of World Neurology. First, we would like to wish you, your families, and your patients all the very best of health and safety in this time of the global pandemic.

Steven L. Lewis, MD, Walter Struhal, MD

This issue begins with the important message from the president of the World Federation of Neurology (WFN), Dr. William Carroll, to all our member societies and neurologists worldwide, with regard to the COVID-19 crisis. In Dr. Carroll’s adjoining President’s Column, he also reviews the current status of the many activities and plans for the WFN, and in another adjoining column, reports on the recent successes with regard to the WFN’s activities with the World Health Organization (WHO).

It has been a while since a book review has been featured in World Neurology, and we are so pleased that this section has returned with the thoughtful and colorful review by Dr. Mark Hallett (a previous editor of World Neurology) on the book recently published on the history of the National Hospital and the Institute of Neurology at Queen Square written by Drs. Simon Shorvon and Alastair Compston. In addition, Dr. John England, editor-in-chief of the Journal of Neurological Sciences (JNS), provides his Editor’s Update of an important special issue of JNS devoted to opiate addiction.

Dr. Serefnur Ozturk reports on a recent “In the Region” session at the Turkish Neurological Society Annual Neurology Congress that was focused on Women in Neurology. Dr. R.S. Jain provides his report of the many activities surrounding World Stroke Day that were held in Jaipur, India. Drs. Marina Alpaidze and Gia Tomadze describe the recent activities of the WFNs Special Interest Group on Neurosonology held in Tbilisi Georgia. Drs. Nils Erik Gilhus, Aud Kvalbein, and Anette Storstein report on the structure and many important activities and accomplishments of the Norwegian Brain Council.

This issue also features several reports from trainees who participated in department visits with WFN partner societies and hospitals in Austria, Canada, and Germany, with wonderful descriptions of their experiences and great appreciation to their hosts. In this issue’s History section, curated by Dr. Peter Koehler, Dr. Egle Sakalauskaite-Juodeikiene describes the history and debunking of a fascinating “disease” that had neurologic and multisystem manifestations, and the sociocultural factors and biases that underlied the belief in the existence of this condition at the time.

Finally, this issue announces calls for nominations for the next open position for Elected Trustee of the WFN and the mechanisms for nomination for this important position.

In closing, we would like to reiterate our wishes to all for safety and health for you, your families, colleagues, and patients in this remarkable and trying time. For global neurology-related COVID-19 resources and information, please refer to the new page on our website: wfneurology.org/covid-19-and-world-neurology. Please also be on the lookout for additional links and resources on the WFN website to freely and widely available eLearning materials that will be of increasing importance and relevance in this time of social distancing.