Industry Partnership Programme 2021 - Global Psoriasis Atlas - The mission of the Global Psoriasis Atlas is to ensure that people with psoriasis ...
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Global Psoriasis Atlas Industry Partnership Programme 2021 The mission of the Global Psoriasis Atlas is to ensure that people with psoriasis have access to the best available care, wherever they live in the world.
www.globalpsoriasisatlas.org @PsoriasisAtlas
The Collaborating
About the GPA Organisations
The GPA is a long-term Phase I of the GPA focussed on the Our work, so far, has provided us with International Federation of International League of International Psoriasis
project that seeks to drive prevalence of psoriasis. During Phase II our robust prevalence data on 19% of
epidemiological work continues alongside countries. We have also conducted Psoriasis Associations (IFPA) Dermatological Societies Council (IPC)
continuous improvement in the that on comorbidities, early diagnosis and psoriasis healthcare surveys in 10 Latin (ILDS)
The International Federation of Psoriasis Founded in 2004, the International Psoriasis
understanding of psoriasis and the health economic impact of psoriasis. American countries and have plans to do Associations (IFPA) is a non-profit Council (IPC) is a dermatology-led,
Officially founded in 1935, the ILDS has
to uncover how it affects both the same in Africa, Asia and Australia. organization comprising psoriasis voluntary, global, non-profit organization
been promoting skin health around the
the individual and society. We have conducted the largest associations worldwide. The organization
world for over 85 years. The ILDS promotes
with a network of more than 100 psoriasis
systematic review1 to date that Our challenge now is to obtain the was founded in 1971 to advance efforts to experts, thought leaders, and professionals,
The GPA is a collaboration between the improvement of dermatological care,
examines global data on the data for the missing 81% of countries improve the lives of people with psoriasis dedicated to improving patient care around
three leading international organisations education and science across the world.
epidemiology of psoriasis. This could and, in parallel, understand access to and improve methods of research and the globe.
in world dermatology: International not have been accomplished without care and treatment options for people treatment for finding the ultimate cause and We provide leadership and support to foster
Federation of Psoriasis Associations Our vision is a world free of psoriasis. We
the support of our industry partners. with psoriasis around the world. cure for the disease. Today, the organization initiatives, projects and policies with global
(IFPA); International League of believe that psoriasis patients, no matter
unites 63 organizations in 53 countries and impact for those affected by skin disease.
Dermatological Societies (ILDS); and where they live in the world, no matter how
Despite the contribution of existing represents the voice of millions of people We bring together 195 Members from
International Psoriasis Council (IPC). complex their symptoms, should have
published epidemiological studies to living with psoriasis and psoriatic arthritis. more than 90 countries representing over
access to the best care available to them,
Despite the contribution of existing the understanding of the occurrence of 200,000 dermatology specialists.
IFPA’s mission is to be the global psoriasis and that ultimately a world without psoriasis
published epidemiological studies to psoriasis, further international research is advocacy association with a focus on Our Global Partnerships for Skin Health is possible.
the understanding of the occurrence of required to better define the global burden empowering our members, improving living Strategy reflects our increasingly
psoriasis, further international research is of the disease. Our mission is to improve the care of people
conditions for patients, raising awareness interconnected world where health issues
required to better define the global burden with psoriasis worldwide through education,
and cooperating with fellow stakeholders. cross borders and where we can only
of the disease. research and advocacy.
achieve our vision of Skin Health for the World
To learn more about IFPA please visit
by working with others. To learn more about IPC please visit
www.ifpa-pso.com
www.psoriasiscouncil.org
To learn more about ILDS please visit
www.ilds.org
The Global Psoriasis Atlas has been supported in 2020-2021 by grants and sponsorships from the LEO Foundation,
Abbvie, Almirall, Amgen, Eli Lilly and Company, Janssen and Novartis Pharma AG. The ILDS facilitates the
financial and contractual
Lead supporter Other supporters governance of the GPA.
1.
Parisi R, Iskandar IYK, Kontopantelis E, Augustin M, Griffiths CEM, Ashcroft DM. National, regional, and worldwide epidemiology of psoriasis: systematic analysis and
modelling study. BMJ 2020; 28;369:m1590.
2 3
Structure and Governance Our Team
Our team is comprised of world-leading, compassionate, hardworking people. This wide-ranging group of
experts share a commitment to uncover the epidemiology of psoriasis and access to care and treatment for
Board of Scientific people living with the disease around the world.
Governors Advisory Board
Research Team PhD Students
Professor Chris Griffiths Alex Trafford
GPA Director The University of Manchester
GPA The University of Manchester
Steering
Collaboration Maha Abo-Tabik
Committee
Team Professor Darren Ashcroft The University of Manchester
GPA Research Director
Regional The University of Manchester
Coordinators* Peslie Ng’ambi
The University of Manchester
Rebekah Swan
Project GPA Programme Manager
Third Party Management The University of Manchester
Collaborators Team * Regional Coordinators are part
Collaborating Organisations
of the Steering Committee
PD Dr Julia-Tatjana Maul Jo Groves
GPA Medical Coordinator ILDS Executive Director
The Atlas will provide
University Hospital Zurich
important data on the true burden of
psoriasis and its cost to the individual
Caroline Bach
The GPA is a melting pot for Researchers and to society in each country around Dr Alison Wright ILDS Project Manager
highly talented people from around the the world. In turn these data will GPA Research Associate
world who focus on achieving the best be foundational to providing the The University of Manchester
care possible for people with psoriasis best care for people with psoriasis, Christy Langan
wherever they may live. In doing so, wherever they live, by highlighting IPC Chief Executive Officer
they contribute to a truly meaningful unmet needs to health authorities, Teng-Chou Chen
research programme. governments, payers, and regulators. GPA Research Associate
The University of Manchester Frida Dunger Johnsson
Professor Darren Ashcroft, Professor Chris Griffiths,
IFPA Executive Director
GPA Research Director GPA Director
Jade Kelly
GPA Administrator Sicily Mburu
The University of Manchester IFPA Scientific Officer
4 5
Our Global Succeeding
Specialist Network Together
Regional Coordinators National Coordinators Partnership is a crucial step
towards achieving the ambition We know that we cannot achieve this Whilst working
alone! We recognise the importance as a dermatology
April Armstrong Yves Poulin Mario Amaya Guerra of the GPA which is to ensure that of collaborating with industry and the
USA Canada Mexico people around the world have pivotal role they have played in our research nurse I observed
access to the best success thus far. first-hand the devastating
Chris Baker Asja Prohic Andre Carvalho available care and treatment impact that psoriasis can
Australia Bosnia and Herzegovina Brazil for their psoriasis. We have demonstrated that we are able have on people’s lives…
to bring influential stakeholders from Our ultimate objective is
around the world together. Consequently,
Arnon Cohen Murlidhar Rajagopalan Cristina Echeverria We recognise that innovative to ensure that people with
and strategic partnerships with our network is growing at a fast pace. Our
Israel India Argentina plans are ambitious but we are confident psoriasis have access to the
organisations are key to delivering
our milestones and achieving the that we can achieve them in partnership best available care wherever
Claudia de La Cruz Ricardo Romiti Benjamin Hidalgo-Matlock aims of the Atlas. with you and would like to invite you to they live in the world.
Chile Brazil Costa Rica be a part of this journey. Establishing a
high quality GPA requires the support Rebekah Swan,
of industry, organisations with relevant GPA Programme Manager
Ncoza Dlova Jacek Szepietowski Cesar Gonzalez Only by fully datasets, and collaboration across
South Africa Poland Colombia regions and countries. We encourage
understanding the all current and prospective partners to
epidemiology of psoriasis support the GPA during Phase II of its
Nejib Doss Colin Theng Farah Novoa Boza
Tunisia Singapore Peru
will it be possible to improve development.
access to treatment and
alleviate the burden of disease
Alexander Egeberg Vermen Verallo Rowell Enrique Rivas
Denmark Philippines Guatemala for as many psoriasis patients
in as many countries as
Mahira El Sayed Xuejun Zhang Fernando Valenzuela possible.
Egypt China Chile PD Dr Julia-Tatjana Maul,
GPA Medical Coordinator
Hazel Oon Min Zheng
Singapore China
6 7
Research Focus Phase II 2020-2023
The GPA and
the World Health Epidemiology
of Psoriasis
Understand and
Characterise the Economic
Organization Implement regular updates to our large
international dataset.
Collaborate with the dermatology workstream
Impact of Psoriasis
Conduct and publish an extensive systematic
review on the economic burden of psoriasis.
of the Global Burden of Disease.
Develop data collection tools to determine the
Provide recommendations on the core data to be economic impact of psoriasis.
included in future epidemiological studies of psoriasis.
In 2014, Member States recognized Conduct new studies to identify, and then quantify,
Conduct new epidemiological studies in the use of healthcare resources, and associated costs
psoriasis as a serious non-communicable selected countries. to the healthcare system.
disease (NCD) in the World Health
Assembly resolution WHA67.9
The resolution highlighted that many
people in the world suffer needlessly from
psoriasis due to incorrect or delayed
diagnosis, social stigmatization, inadequate
treatment options and insufficient Recognising the Improving the Early
access to care. The resolution requested
that WHO publish a global report2 on Comorbid Disease Diagnosis of Psoriasis
psoriasis, including the global incidence Burden of Psoriasis Conduct a case-control study to examine the
extent of misdiagnosis of psoriasis.
and prevalence, emphasizing the need for
Conduct new studies to improve knowledge
further research on psoriasis. about the comorbid disease burden of psoriasis Conduct validation studies of our recently
with a particular focus on cancer incidence and developed clinical diagnostic criteria.
associated mortality.
Development and feasibility testing of a training
tool for psoriasis diagnosis.
2.
World Health Organization. (2016). Global report on psoriasis. World Health Organization. https://apps.who.int/iris/handle/10665/204417
8 9
Why Support the GPA? Support Packages
You will • Support a programme of research that • Will increase your visibility among the Global Supporter Regional Supporter National Supporter
aims to explore comorbid diseases and psoriasis healthcare community. Recognition and Engagement
• Be part of a global network committed to
to uncover the health economic impact
£100,000 and above £51,000-99,000 Up to £50,000
psoriasis research. • You can work with us on joint press
of psoriasis on the individual and society releases and media outreach on
• Support the collection of data on the at large. The GPA Director, Research Director,
relevant dates, projects and events. Medical Coordinator and Programme
global burden of psoriasis.
• Assist our endeavours to ensure early
Becoming a Partner • We will highlight your commitment to
the GPA in our newsletters, annual
Manager will meet with your
organisation annually to present on
3
and accurate diagnosis of psoriasis • You will be recognised as an official progress. (Meeting duration = 2 hours)
supporter and will be named on all GPA reports, website and through our social
around the world. The GPA Director, Research Director,
publications. media outlets.
• Contribute to improving knowledge Medical Coordinator and Programme
of access to care and treatment for
psoriasis patients globally.
• New supporters will be recognised
with a thank you post on all GPA social
• You will receive regular updates on our
initiatives, projects and progress.
Manager will meet with your organisation
annually to present on progress.
3
media accounts. Please find details in our GPA Partnership (Meeting duration = 1 hour)
• Help us to achieve our aim of ensuring
• You will be able to attend invitation only Programme Support Packages (page 11). Receive an open invitation for members
that patients receive the best available
care wherever they live. GPA meetings, with an opportunity to
meet the GPA Director and members of
of your organisation to attend the GPA
Funders’ briefing held twice a year..
3 3 3
the GPA team.
Work with us on joint press releases
and media outreach on relevant dates
for projects or events.
3 3 3
GPA Partnership Programme Opportunities for ‘in-kind’ contribution
and collaboration on GPA field research. 3 3 3
Receive regular updates on our
Delivery of the GPA requires us could provide your organisation with the grateful to Janssen UK who supported us initiatives, projects and progress. 3 3 3
ongoing support from our ideal vehicle to realise your corporate social with our work in Tanzania. Through their
responsibility (CSR) agenda. For example, in CSR programme a member of their staff
industry partners. Receive recognition on our newsletters,
This scheme is designed to outline the
2019 we took a small team to the Interna-
tional Foundation for Dermatology (IFD)
travelled with us to provide assistance with
the survey, logistics, photography, social
annual reports and publications. 3 3 3
packages associated with different levels Regional Dermatology Training Centre in media and digital communications. We in-
of financial support. This will enable you Moshi, Tanzania. The purpose of this expe- tend to conduct further research of this kind Logo recognition and corporate link
to select the appropriate level of support dition was to work with dermatology spe-
cialists from across the Sub-Saharan region
in other low and middle income countries
where data on the epidemiology of psoriasis
present on the GPA website. 3 3 3
for your organisation. There is also the
opportunity to commit to repeat annual to conduct a workshop and two pilot field are sparse. We would be delighted to collab-
New supporters will be recognised
funding. We are keen to collaborate in
innovative and unique ways. Working with
surveys and to learn more about access
to psoriasis healthcare in Tanzania. We are
orate with your organisation on some of our
exciting new global research projects.
with a thank you post on all GPA social
media platforms.
3 3 3
10 11
Global Research Greenland
Collaborations
Greenland is the world’s largest island and is a self-governing entity
The GPA team are planning to
within the constitutional monarchy of Denmark. There are about 56000
conduct an epidemiological persons living in the country of which approximately 90% are of Inuit heritage1.
study on the prevalence There are currently no studies that have examined the prevalence of psoriasis
of psoriasis in Eastern among Inuits and their descendants. In collaboration with the GPA, we plan
Our global network is growing and requests for collaboration are increasing. We are currently to perform a cross-sectional study of Greenlandic adults from the general
Greenland, in collaboration
working on a number of projects with colleagues from around the world. Here is an overview of population to determine the prevalence of frequent dermatological conditions,
with Professors Thyssen
some of our latest collaborations. including psoriasis, pustulosis palmoplantaris, atopic dermatitis and chronic
and Zachariae from the hand eczema.
University of Copenhagen.
Professor Jacob P. Thyssen and Associate Professor Claus Zachariae
Myanmar 1
Moltke I, Fumagalli M, Korneliussen T, et al. Uncovering the Genetic History of the Present-Day
Greenlandic Population. Am J Hum Genet. 2015;96(1):54-69. doi:10.1016/j.ajhg.2014.11.012.
We are currently working on Working with Dr Su surveys in the
plans for a small team from the Lwin, a Burmese born dermatology
dermatologist from Kings clinics. Despite
GPA to visit Myanmar in early College London and the inevitable
2022 to run a workshop for local co-founder of the Burma Skincare challenges, we are also keen to
dermatologists and to facilitate Initiative, and Professor Khine Khine explore the lived experience
discussions on a future large Zaw from University of Medicine of people with psoriasis in
scale epidemiological skin disease
survey in which the GPA would
1, Yangon, we plan to use local
knowledge and contacts to facilitate
our work with dermatologists and
Myanmar and are working with the
International Federation of Psoriasis
Associations to explore the set-up
Qatar Newfoundland
have a coordinating role. patients to conduct healthcare of a patient association there.
Working with Professor
Wayne Gulliver and Professor
Proton Rahman, using a
Working with Professor Martin rich dataset from the large
Steinhoff the GPA team plan to: cohort of psoriasis patients
• Carry out a validation study Professor
in Newfoundland, the GPA Wayne Gulliver
of demographic data already
obtained in Qatar
team will explore the following
• Advise on a cohort study of
psoriasis research areas:
incidence and prevalence • Epidemiology
• Engage in research on psoriasis Professor • Comorbidities Professor
Professor Chris Griffiths (9th from left) and Dr Su Lwin (10th from left) with Professor Zaw Wai Soe (8th from left) – Rector (Dean)
and multi-morbidity Martin Steinhoff • Economic impact Proton Rahman
of University of Medicine (UM1) 1 Yangon, Professor Khine Khine Zaw (11th from left) – Dermatology Lead and her team at UM1,
photograph taken outside the UM1 building in December 2018.
12 13
TANZANIA 2019
The GPA is
doing fantastic work
Engagement
and offers all of us who
have this condition
hope for a brighter
and healthier future.
Russ, a patient in the UK To learn more about the GPA and how
you can get involved please contact:
GPA Programme Manager, Rebekah Swan:
Professor Griffiths, Rebekah Swan and the research team with some of the Maasai elders, women and children rebekah.swan@manchester.ac.uk
TANZANIA 2019 BRAZIL 2020
One disease – millions of
individuals. Millions of stories of
heartache, frustration, pain and Visit our website
dealing with a lack of understanding www.globalpsoriasisatlas.org
and access to adequate healthcare.
The Global Psoriasis Atlas project
provides the data and information Follow us on Twitter, Instagram and Facebook
needed to effect real change and @PsoriasisAtlas
has the potential to truly improve
the health and quality of life for
people with psoriasis. Not just in
one place – all over the world.
PD Dr Maul with Dr Wagner Galvão in
Barbra, a patient in Sweden a psoriasis clinic at Hora-Cera Penha Visit Our Youtube Channel
Dr Kathryn Hampton, Janssen, skin health promotion in Maasai Land public hospital Global Psoriasis Atlas
TANZANIA 2019 BRAZIL 2020
Subscribe to our newsletter HERE
Professor Griffiths, Professor Ncoza Dlova and Dr Daudi PD Dr Maul presenting on the GPA and psoriasis comorbidities at the
Mavura reviewing psoriasis patients at the RDTC University Hospital São Paulo, Brazil
14 15
www.globalpsoriasisatlas.org @PsoriasisAtlas
June 2021 | DW.3624.06.21
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