Quarterly Newsletter - January 2022 - Issue No. 13

chris griffiths

Welcome to the thirteenth edition of the Global Psoriasis Atlas (GPA) newsletter. I do hope that you all managed to find some time to relax over the December holidays after another COVID-induced year. Let us hope we can retain a sense of normality in 2022 as and when travelling for work resumes, allowing us to meet face-to-face again after two years of Zoom and Teams! I would like to thank our Coordinators, administrative team and research collaborators for continuing to work diligently in support of the GPA despite the contingencies of the pandemic.

 

A few members of the GPA team had a successful trip to London in December to attend the 9th Congress of Psoriasis: From Gene to Clinic which I co-organised and co-chaired with Professor Jonathan Barker (St John’s Institute of Dermatology). We founded this premier psoriasis meeting 25 years ago. Professor Darren Ashcroft was an invited speaker and presented updates on the GPA progress whilst Dr Alex Trafford presented his PhD work examining cancer events in patients with psoriasis. I would like to take this opportunity to congratulate Alex for completing his PhD and wish him all the best in his future endeavours.

 

Our global collaborations continue to gather pace as research continues with colleagues in Newfoundland, Qatar and Taiwan. We are looking forward to travelling to Greenland in May this year to conduct a pilot study in Tasiilaq on the Eastern seaboard with Professors Jacob P. Thyssen and Claus Zachariae (Copenhagen). Quite a contrast to our last fieldtrip to Tanzania in 2019.

 

Our GPA Medical Coordinator, Dr Tatjana Maul, has been in contact with all of our Regional Coordinators with details on how to register their centres to participate in the GPA Global Healthcare Study. The purpose of the study is to enable further mapping of psoriasis and access to care on a local and regional level and to help us gain a better understanding of common psoriasis characteristics. An important piece of work.

 

Meanwhile, I do hope you and your families have had a safe and successful start to the New Year.

 

With my best wishes,
Chris Griffiths

Research Update

darren ashcroft

Professor Darren Ashcroft
GPA Research Director

 

Since my last update, it has been a busy few months taking forward our GPA research programme. In December, I had the pleasure of presenting on the GPA research achievements at the Psoriasis: Gene to Clinic conference held in London. Alex Trafford also presented the findings from his PhD programme focused on examining the association between psoriasis and the incidence of cancer. I am delighted to report that Alex also successfully passed his PhD viva at the end of 2021 and wish him many congratulations on behalf of the GPA team!

 

We have completed a new 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.

 

Over the last six months, we have also been working closely with Choon Siew Eng to examine 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 and her team to make this work possible.

 

Finally, we are planning to take forward several new studies this year in Canada in collaboration with Wayne Gulliver and are hoping to undertake a field trip to Greenland to develop and test methods for a future epidemiological study examining psoriasis prevalence (and atopic dermatitis) in May 2022. The latter has involved working in close collaboration with Claus Zachariae and Jacob Thyssen at the University of Copenhagen. We very much look forward to providing future updates on these new initiatives in due course.

 

Medical Coordinator Update

IRASPEN

tatjana maul

PD Dr Julia-Tatjana Maul
GPA Medical Coordinator

 

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

  • Quality of Life Scores

    • DLQI

    • EQ-5D

    • WPAI-GH

    • PSS

  • Patient reported outcomes:

    • Disease activity VAS

    • Pain VAS

 

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
iraspen web

GPA Global Healthcare Study

 

 

The GPA Global Healthcare Study is now live!

 

The GPA 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 especially grateful to our colleagues in China and Africa 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 GPA 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 GPA Global Healthcare Study and ethical approval process, please contact:

PD. Dr Julia-Tatjana Maul (University Hospital of Zürich, Switzerland) onboarding@gpastudy.org
 

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: Daniela Armijo & Claudia De la Cruz

daniela armijo claudia de la cruz

Dr Daniela Armijo & Dr Claudia De la Cruz

 

During 2021, Dr Claudia De la Cruz, Director of Clínica Dermacross, in Santiago, Chile and Dr Daniela Armijo, launched the campaign “Treating Psoriasis”, with the aim to provide information about all the different aspects of the disease and its available treatments to patients with psoriasis and their families.

 

We developed a web page (www.lapsoriasis.cl) and a book that we expect to deliver 1000 copies to patients with psoriasis, free of charge. We also developed an online survey that was available to be completed on the webpage. The objective was to collect sociodemographic data and information about access to treatment for psoriasis patients in order to contribute to the Global Psoriasis Atlas. We obtained 3192 valid answers, 69% were female and 31% male. 42% answered that they have at least 1 relative with psoriasis – psoriasis vulgaris and scalp psoriasis were the most common types. 65% of patients reported comorbidities, and obesity (26%), hypertension (20%), depression (16%), insulin resistance (15%), dyslipidaemia (12%) were the most frequent. 14% reported psoriatic arthritis. The majority were being treated with topicals, 30% said they were not receiving any treatment, and 9% were on methotrexate. Only 50 out of 3192 patients said they were on biologics: secukinumab > golimumab > etanercept > adalimumab > infliximab > guselkumab > risankizumab and the majority of them also had psoriatic arthritis (p<0.001). 20% of patients responded they had stopped working due to the disease; the majority had psoriatic arthritis (p<0.001). The results suggest that access to biologics is limited, probably due to high costs. We aim to continue with the campaign in 2022, collecting new data about the epidemiology of psoriasis.

Congratulations Dr Alex Trafford!

alex trafford

The GPA team would like to congratulate Alex Trafford for completing his PhD and officially gaining the title Dr! Alex has been an integral member of the research team in Manchester and has accumulated a number of achievements during the length of his PhD, including the publication of his systematic review in JAMA Dermatology in 2019. We wish Alex the best of luck in his new role as a Research Associate in the Division of Pharmacy and Optometry.

 

9th International Congress – Psoriasis: from Gene to Clinic

Members of the GPA team were pleased to be able to attend their first in-person congress since the start of the pandemic – the 9th international congress of the triennial psoriasis meeting, held over from 2020, Psoriasis: from Gene to Clinic, co-founded and co-chaired by Professors Chris Griffiths and Jonathan Barker. Professor Darren Ashcroft presented on the epidemiology of psoriasis and the GPA. Dr Alex Trafford presented the findings from his PhD studying psoriasis and cancer incidence and mortality. GPA Programme Manager, Rebekah Swan also attended the congress and shared a variety of resources to help to promote the work of the GPA.

 

dr alex trafford presenting the findings from his phd

Dr Alex Trafford presenting the findings from his PhD

 

gpa resources and promotion

GPA resources and promotion

 

professor darren ashcroft presenting on the epidemiology of psoriasis and the gpa

Professor Darren Ashcroft presenting on the epidemiology of psoriasis and the GPA

 

Greenland

The GPA team will join colleagues from Denmark, Switzerland and the UK to undertake the planned pilot survey in Tasiilaq, Eastern Greenland in May 2022. The intention is for this preliminary study to link to the national population health survey that will take place in Greenland in 2023. Ethical approval is now in place and the overarching purpose of the study will be to assess the point prevalence of psoriasis and atopic dermatitis. 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.

 

greenland

Psoriasis Training Tool

Psoriasis affects almost three in every hundred people in the UK. Patients first attend a GP clinic before being referred to a dermatologist for their skin problems. To provide better medical care, GPA PhD student, Maha Abo-Tabik, developed an educational resource (tool) for psoriasis based on the findings from our recent e-Delphi study. The tool is intended to be used by primary health care professionals to improve their knowledge about psoriasis presentation and consequently support them in making an accurate diagnosis of the skin disease.

 

The study has been included in the National Institute of Health Research (NIHR) portfolio and was adopted by the Clinical Research Network (CRN) to facilitate participant recruitment. Currently, we are in the participant recruitment stage. We expect to reach the number of participants needed for the study in the coming few weeks. In the meantime, we will start reviewing and analysing available data.

 

We aim to publish the outcome of this online research project in one of the highly ranked peer reviewed journals.

 
training tool

The Regional Dermatology Training Centre (RDTC) 27th CME Conference, Moshi, Tanzania

The 27th RDTC International CME Conference took place between the 12th and 15th of January. This was a hybrid meeting with delegates from sub-Saharan Africa and further afield in attendance. GPA Director, Professor Chris Griffiths, presented a summary of the findings from the GPA’s field study in Tanzania in 2019. He also discussed the difficulties in managing the disease in that part of the world emphasising that psoriasis is often first diagnosed as a fungal infection in Tanzania and treated accordingly. GPA Medical Coordinator, PD Dr Tatjana Maul, presented the findings from her field trip across Latin America in January 2020.

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Upcoming Meetings

  • GPA Strategic Review Meeting:
    Monday 14    th March – The GPA team and Collaborating Organisations will meet to review progress during Phase II of the Atlas and to conduct short, medium and long term strategic planning.
     

  • American Academy of Dermatology Annual Meeting, Boston USA:
    25    th – 29th March 2022– GPA Steering Committee and Board Meeting, 26th March, 2022 (times TBC, meetings will be hybrid)
     

  • European Academy of Dermatology and Venereology Congress, Milan, Italy:
    7    th-10th September 2022 (times TBC, meetings will be hybrid)