Quarterly Newsletter - April 2022 - Issue No. 14

chris griffiths

It’s hard to believe but this is the fourteenth edition of our Global Psoriasis Atlas (GPA) newsletter – time flies. Spring is here in the Northern Hemisphere and life is emerging from the COVID pandemic as travel restrictions begin to disappear. After two long years of formal, focused and somewhat impersonal Zooms and Teams meetings, it was so refreshing to see so many of you in person again at the Annual Meeting of the American Academy of Dermatology in Boson last month. The GPA team held successful meetings with our Steering Committee and Board of Governors including the Chair of our new Scientific Advisory Board Professor Bob Dellavalle. We are excited about the opportunities that Bob and his team will provide for the GPA with their advice and expertise.

 

Since I last wrote to you, the GPA Annual Report 2021-2022 has been published and I am delighted to let you know that it has been received well by our funders and collaborators. Thank you to everyone who provided updates for the report and to those were involved in the extensive editing process. Please do follow the link below to read the report and see what we achieved in 2021, as well as what we have planned for 2022 and beyond.

 

In March, key members of the Research Team and our Collaborating Organisations met to share ideas and to discuss the GPA’s strategy going forward into Phase III beginning in April 2023. It was a highly productive session, one in which we were honest about the strengths, weaknesses, opportunities and threats faced by the GPA. This is an iterative process with further meetings planned as we move into the funding cycle for Phase III.

 

The GPA is truly global in its reach with a number of research collaborations taking place in Malaysia, Taiwan, Newfoundland and Qatar. We are looking forward to our field trip to Greenland in May where we will be joined by colleagues from the University of Denmark to undertake a pilot study assessing the prevalence of psoriasis and atopic dermatitis. The intention is for this preliminary study to link to the national population health survey that will take place in Greenland in 2023. We will report back on our experiences in the far North in the next Newsletter.

 

With my best wishes,
Chris Griffiths

Research Update

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Professor Darren Ashcroft
GPA Research Director

 

The GPA team are looking forward to undertaking our next field trip to Greenland to develop and test methods for a future epidemiological study examining psoriasis prevalence (and atopic dermatitis) in May 2022. The planning for the trip has involved close collaboration with Professors Claus Zachariae, Jacob Thyssen and team at the University of Copenhagen.

 

Since my last update, we have completed a new study examining the incidence and prevalence of psoriasis in Malaysia. This is important work as it is the first time that data will be reported on the epidemiology of psoriasis in south-east Asia. We are very grateful for the valuable contributions made by Choon Siew Eng and her team to make this work possible.

 

We have recently completed a study examining changes in the prevalence, incidence, and mortality rates in people with psoriasis or psoriatic arthritis in Taiwan. This population-based study analysed data from the Taiwan National Health Insurance claim records over a 12-year period. These findings have been submitted for publication. Building on this, we are close to completing another new study using the national claims database from Taiwan examining the risks of serious infection in people with psoriasis. We look forward to sharing further details on this programme of work later in the year.

 

Finally, we have made very good progress in recent months with our work focussed on improving the diagnosis of psoriasis. The evaluation of our diagnostic training tool has recently been completed in which we recruited general practitioners, nurses and pharmacists to test the new resources. We very much look forward to providing future updates on these new initiatives in due course.

Medical Coordinator Update

julia maul

PD Dr Julia-Tatjana Maul
GPA Medical Coordinator

 

PD. Dr Maul and Programme Manager, Rebekah Swan, will be contacting the GPA Regional Coordinators in the coming weeks to arrange further meetings. The purpose of these meetings is to outline how the GPA team can support the Regional Coordinators to explore the opportunities for new epidemiological studies on psoriasis in their countries and regions. During 2022 we aim to implement the appointment of National Coordinators in other regions as we have done in Latin America working with Regional Coordinators, Professor Ricardo Romiti and Professor Claudia De la Cruz.

 

IRASPEN

 

The IRASPEN team, led by Principle Investigator, PD. Dr Julia-Tatjana Maul, and Professor Alexander Navarini, are delighted to report enrolment of the first 8 patients in the study in Switzerland (Zürich and Basel). This is an important first step towards gaining insights into the natural course of pustular psoriasis, disease burden, therapeutics and genetics. The team also hope to open two study sites in the UK, working with Professor Jonathan Barker and Professor Chris Griffiths. A number of other sites around the world are at various stages of the ethics approval process and will be joining the study in the near future.

 

We are grateful to all the Regional Coordinators who have expressed an interest in assisting with recruitment to the IRASPEN registry and look forward to working with you on this study.

 

Please continue to share the following information with your colleagues and across your networks:

 

The IRASPEN registry is a global, prospective registry, investigating the genotype-phenotype correlation of pustular psoriasis (PP). IRASPEN comprises the prospective collection of data and biological material from multiple, global sites:

https://www.iraspen.org/

 

The sub study IRASPEN-CS is a cross-sectional design comprising a one-time collection of data based on the first visit of the IRASPEN main project.

 

Objectives of the registry

 

  • To give insight on the natural course of disease in PP, namely reveal the burden of disease including frequency and severity of flares

  • To reveal the need and efficacy of therapeutic interventions

  • To reveal further genetic causes of PP

  • To describe transcriptional profiles, correlating with subtypes and severity of disease

 

Primary and secondary endpoints

 

  • Objective disease activity:

    • Number of flares in the last 2 years (baseline) / since the last visit

    • PGA (depending on PP subtype, further specified as GPP PGA, PPP PGA)

    • PP area and severity score, namely GPP ASI, PPP ASI

 

The variable of primary interest (corresponding to an endpoint in a clinical trial) is the PGA / IGA severity grade, and as it is an observational study, both the first as well as all other visits are relevant.

 

PD. Dr. Maul is keen for all GPA Regional and National Coordinators and dermatologists from around the world to contribute to the study. The electronic case report form, information on ethical approval and reimbursement for the study can be provided on request. For further information, please contact:
Julia-Tatjana.Maul@usz.ch
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Psoriasis Global Healthcare Study

 

 

The GPA Global Healthcare Study is now live!

 

The Psoriasis Global Healthcare Study is an independent research project that is conducted by PD. Dr Julia-Tatjana Maul in collaboration with the GPA and uses a data driven approach to further map psoriasis and improve the lives of psoriasis patients around the globe.

 

Our Regional and National Coordinators have all received an email with detailed guidance on how to sign up and register and an increasing number of centres around the world are now taking part, including Chile, Brazil, Switzerland, Singapore, Peru, Senegal, Burkina Faso, China and Costa Rica. We are grateful to all our colleagues around the globe to for their efforts in sharing the survey with dermatologists in their region – thank you! The registration process is quick and easy and takes less than five minutes to complete.

 

During this important phase of work, we are asking GPA Regional and National Coordinators to sign up for the study and to link us with colleagues that might be interested in participating, thus widening the GPA research network. Thank you to you all for your engagement with this process so far and for your hard work in identifying dermatology colleagues in your regions. This is a truly exciting phase of work and the enthusiasm globally is excellent.

 

The purpose of the Psoriasis Global Healthcare Study is to enable further mapping of psoriasis on a local and regional level and to help us gain a better understanding of common psoriasis characteristics:

 

  • Severity

  • Characteristics and frequency of comorbidities

  • Available treatment options – based on ethnicity and gender

  • Differences in quality of life

  • Burden of disease

  • Influence of the level of education on the treatment response

 

Please do send us a list of potential collaborating partners. If you require any further information regarding the Psoriasis Global Healthcare Study and ethical approval process, please contact:

 

PD. Dr Julia-Tatjana Maul (University Hospital of Zürich, Switzerland)
julia-tatjana.maul@usz.ch

 

If you would like to arrange a call regarding any other GPA related work, please contact: GPA Administrator, Jade Kelly (University of Manchester, UK) jade.kelly@manchester.ac.uk

 
 

Regional Coordinator Update

xuejun zhang

Xuejun Zhang - China

 

So far, the Chinese GPA project has collected 3833 patients with psoriasis, including 2598 men and 1235 women with a male to female ratio of 7:3. These patients include 3,596 patients with psoriasis vulgaris, 92 patients with psoriasis pustulosa, 49 patients with psoriasis arthropathica, 66 patients with psoriasis erythrodermic and 30 patients with other types of psoriasis. There were 1,175 patients with moderate to severe psoriasis and 2,658 people with mild psoriasis. In the past year, more than 80 units from China participated in the GPA project and Psoriasis Global Healthcare Study. Relying on the GPA project, the Chinese GPA Committee and Chinese Psoriasis Committee also held more than 40 GPA academic and popular science lectures. The GPA project will continue to be carried out in China in the future.

 

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Annual Report

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The GPA Annual Report 2021-2022 was published on the 31st March. Click the image below to see what we accomplished in 2021 and what we have planned for 2022 and beyond – we have been very busy! Thank you to all Regional and National Coordinators and GPA collaborators for their contributions to the Annual Report.

 

Annual Meeting of the American Academy of Dermatology

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The GPA Steering Committee and Board meetings took place during the Annual Meeting of the American Academy of Dermatology in Boston on 26th March. The meetings were hybrid with a combination of in-person and online attendance. It was a great pleasure for so many of us to be able to meet face-to-face after a long period of travel restrictions. The Steering Committee meeting included updates from the GPA Director who focused on the GPA’s numerous global collaborations. GPA Research Director, Professor Ashcroft, gave an overview of research progress and Medical Coordinator, PD. Dr Maul, updated on her work with the GPA Regional and National Coordinators and the Psoriasis Global Healthcare Study. Programme Manager, Rebekah Swan, provided an overview of marketing and communications and there was an opportunity for updates from the Regional Coordinators.

 

It was a privilege to welcome Professor Robert Dellavalle, Chair of the GPA Scientific Advisory Board, who presented to the GPA Board of Governors.

 

Greenland Update

From the 7th-11th May, the GPA team will join colleagues from Denmark, Switzerland and the UK to undertake a pilot survey in Tasiilaq, Eastern Greenland. This preliminary study will link to the national population health survey that will take place in Greenland in 2023. Ethical approval is in place and the overarching purpose of the study will be to assess the point prevalence of psoriasis, atopic dermatitis and chronic hand eczema. Furthermore, the ethical approval allows for the collection of skin and mouth swabs for skin microbiome, DNA and epigenetic samples. The team will also collect data on other skin diseases.

 

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Scientific Advisory Board

The newly appointed Scientific Advisory Board will provide the GPA Board of Governors with independent and international scientific oversight of the work of the GPA. They will have responsibility for reviewing research priorities and advising on significant developments which may affect the GPA. The Scientific Advisory Board consists of Professor Robert Dellavalle (chair), Professor Mohsen Naghavi and Professor Luigi Naldi.

 
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From the left: Professor Robert Dellavalle, Professor Mohsen Naghavi, Professor Luigi Nald

Pending Publication

maha gpa

Congratulations to GPA PhD student, Maha Abo-Tabik, who has had her paper “Mapping opportunities for the earlier diagnosis of psoriasis in primary care settings in the UK” accepted for publication in the British Journal of General Practice. Once published, we will post the link on our Twitter page so please do make sure you’re following us at @PsoriasisAtlas for the latest GPA updates.

Strategic Review Meeting

 

In March, key members of the GPA Research Team and Collaborating Organisations met to review progress during Phase II of the Atlas and to begin to consider short, medium and long term strategic planning moving into Phase III. This meeting presented an opportunity to discuss the strengths and weakness of the GPA as well as any opportunities and threats facing the project. The Strategic planning process continues, with meetings scheduled for May and June 2022.

Upcoming LEO Foundation Meeting

We look forward to welcoming the LEO Foundation team to the University of Manchester on May 30th 2022. The purpose of this meeting is to update the LEO Foundation team on our current research progress and to outline some of our plans for Phase III of the programme. We look forward to reporting on this meeting in the next edition of the GPA newsletter.

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The LEO Foundation team’s visit to the University of Manchester, 2019

Dates for your Diary

  • The GPA Steering Committee and Board Meetings to be held during the European Academy of Dermatology and Venereology meeting, 7-11th September 2022 Milan, Italy – in person meetings with online access:
    Saturday 10    th September (TBC)