Quarterly Newsletter - October 2021 - Issue No. 12

Welcome to the twelfth edition of the Global Psoriasis Atlas (GPA) newsletter and to the beginning of this year’s Psoriasis Awareness Week! Our GPA Programme Manager, Rebekah Swan, and Administrator, Jade Kelly, have been keeping busy with a number of projects during the lead up to World Psoriasis Day (WPD) on 29^th October including the recording of new patient stories for our WPD social media campaign, the development of the Pso Well^™ resources into a web app and the translation of the GPA website into Spanish – all of which you can read about in more detail below.

This Newsletter provides updates on our myriad exciting initiatives from the development of digital resources to a number of research projects taking place around the world – the GPA is truly global in its reach! Our Medical Coordinator, Dr Tatjana Maul, has launched the online GPA Global Healthcare Study – I do hope you will be able to participate. Our global collaborations continue to gather pace and we are looking forward to meeting with Professor Jacob P. Thyssen and Associate Professor Claus Zachariae in November to finalise the pilot study and field trip to Greenland in May 2022.

I would like to thank Dr Yves Poulin for the time and effort he spent as Regional Coordinator for Canada and wish him all the best for his retirement. In Yves’ place, we welcome Professor Wayne Gulliver (Newfoundland, Canada) who we are excited to have join the team. This has been a busy few weeks for the GPA with webinar presentations by the team at the IPC SE Asia Masterclass, the specially convened ILDS webinar about the GPA and as part of the British Association of Dermatologists’ 3^rd Global Health Dermatology Day with further presentations recorded for WPD 2021. Thank you to all our Regional and National Coordinators for their tireless support of the Atlas and I know this is early but may I extend my good wishes for the upcoming Holiday Season!

Chris Griffiths

I am delighted to report that we are continuing to make very good progress with our GPA research programme. Recently, we have 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.

Building on this, we are now undertaking a 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 in the New Year.

Over the last few months, we have also been working closely with Choon Siew Eng to examine the incidence and prevalence of psoriasis in Malaysia. This is hugely 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, Alex Trafford, one of our GPA PhD students, has recently submitted his PhD thesis for examination. The viva will take place in the coming weeks and we look forward to celebrating his success in due course. Alex will also be presenting the findings from his work at the forthcoming Psoriasis: Gene to Clinic conference held in London in December.

The IRASPEN team are delighted to report enrolment of the first patients in the study, in Switzerland (Zürich and Basel) during October. This is an important first step towards gaining insights into the natural course of pustular psoriasis, disease burden, therapeutics and genetics.

Thank you to GPA Regional Coordinators, Professor Ricardo Romiti (Brazil) and Dr Hazel Oon (Singapore), who will shortly begin recruitment to the study. We are also grateful to 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.

The GPA Global Healthcare Study is now live! Our Regional and National Coordinators have all received an email with detailed guidance on how to sign up and register and 20 centres are now taking part, including Burkina Faso, UK, Peru, Senegal and Costa Rica. 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

We recently found the prevalence of psoriasis amongst adults in the United States (U.S.) to be 3.0%. This was determined from the 2011-2014 NHANES survey cycles. We used NHANES datasets because NHANES uses a multistage, stratified survey methodology and over-samples minority and low-income populations to ascertain prevalence data that are representative of the general U.S. adult population.

Using the 2020 U.S. Census data, we estimated over 7.5 million U.S. adults have psoriasis. This shows that psoriasis remains one of the most common immune-mediated diseases suffered by many adults in the U.S. Overall, compared to those without psoriasis, psoriasis patients tended to be older. Additionally, psoriasis was most common amongst whites (3.6%) and least prevalent among blacks in the U.S. (1.5%). However, those with and without psoriasis had similar levels of other sociodemographic factors.

Our findings were published in JAMA Dermatology and can be found here:

https://jamanetwork.com/journals/jamadermatology/article-abstract/2781378

It is a pleasure and honour to have been invited to be the Regional Coordinator for Canada and to join many friends and colleagues who are part of the Global Psoriasis Atlas team. The Global Psoriasis Atlas, in my opinion, is the most important endeavor undertaken to improve the challenges psoriasis patients face worldwide. Its mission and research both align extremely well with research efforts conducted both at Memorial University and New Lab Clinical Research. Newfoundland and Labrador has a unique founder population with psoriasis being the most commonly genetically determined auto-inflammatory disorder. To date, we have identified 15,000 psoriasis patients (confirmed by dermatologists) which is 3% of our provinces population. For the past 32 years, with the help of these patients, we have made significant strides in understanding the genetics of the disease, health care utilization, and treatment response in this patient population. Our initial paper in 2011 outlined the comorbid disease found in the psoriasis patients of Newfoundland and Labrador. Other research areas include the role of biologics and methotrexate in preventing myocardial infarction and a biologics treatment registry that prospectively collects data and has been in place since 2004. The most recent collaboration with Dr. Proton Rahman, the Newfoundland and Labrador Center for Health Information, and Janssen Canada is undertaking studies to understand the impact of mental health and cardiovascular disease in these 15,000 psoriasis patients. In the future, we hope to contribute patients to the GPA Global Healthcare Study. Another endeavor is to collaborate with the GPA to understand the true incidence and prevalence of psoriasis in the Newfoundland and Labrador population. Other ongoing collaborations include participation in the IRASPEN pustular psoriasis study.

I would like to introduce you to our study team which includes myself, Professor Wayne Gulliver, MDFRCPC, Professor of Medicine and Dermatology at Memorial University of Newfoundland and Labrador; Susanne Gulliver, MPH, Senior Researcher; Michelle Penney, MSc, Medicine (Statistical Genetics); Op Yadav, MSc (Statistical Medicine /Statistical Modeling); Michael Oluwalana, MSc, Medicine (Public Health); Lisa Daley, MSC (Data Coordination); Winnifred Ekhaisomi R.N. (Research Coordinator); Devi Dyalsingh (Patient Support Staff); Allison Oliver (Patient Support Staff) and Stephanie Locke (Executive Assistant).