Quarterly Newsletter - July 2021 - Issue No. 11

Welcome to the eleventh edition of the Global Psoriasis Atlas (GPA) newsletter. Here in the UK, as of the 19th July, most COVID restrictions have been lifted, although masks are required on public transport, mainly because of the success of the vaccination programme. A sense of nervous normality prevails. Unfortunately, I know that this is not the case around the world with many countries such as Australia and Taiwan once again entering national lockdowns. I would like to thank our Coordinators and research collaborators for continuing to work diligently in support of the GPA despite the struggles of the pandemic.

Since I last wrote to you, the GPA has accumulated a number of successes such as the publication of Alex Trafford’s paper examining cancer events in PLOS ONE and the presentation of Maha Abo-Tabik’s poster examining the early diagnosis of psoriasis at the 6th World Psoriasis and Psoriatic Arthritis Conference, both of which you can read about below. Both Darren Ashcroft and I also lectured on the GPA at the Congress. Medical Coordinator, Tatjana Maul, has been working tirelessly on the GPA healthcare survey which will be ready for rollout once the final revisions have been made. The purpose of the GPA survey 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.

Research collaborations are progressing successfully with colleagues in Taiwan, Denmark, Greenland, Newfoundland and Qatar. The GPA’s plans to visit Myanmar have been postponed to 2022 due to the challenging situation in the country, however, in the interim, we are hoping to put together a series of educational webinars on psoriasis to support local colleagues. We are also currently working with digital agency, Swiss4ward, to develop the PsoWell resources into a web-app to enable access for psoriasis patients around the world.

Meanwhile, may I wish you some relaxing time off over the summer and a return refreshed for what will be a dynamic and exciting final quarter to 2021.

With my best wishes,
Chris

I am very pleased to report that we have continued to make steady progress with our GPA research programme despite the many challenges presented by the COVID-19 pandemic. Recently, the work led by Cristóbal Lecaros and Claudia De la Cruz to examine the incidence of psoriasis in Chile has been published in Clinical and Experimental Dermatology which you can view here: https://onlinelibrary.wiley.com/doi/10.1111/bjd.20096. Building on this, we are now finalising a new paper focussed on understanding the burden of co-morbidity in people with psoriasis in Chile. This is hugely important work and another major achievement for the GPA; and we look forward to sharing details of this paper once published.

Several of our GPA Regional Coordinators have also published additional important papers focussed on the epidemiology of psoriasis in recent months too. April Armstrong has recently examined the prevalence of psoriasis among adults in the US using the 2003-2004 National Health and Nutrition Examination Survey (NHANES) data, reporting that psoriasis affects 3.0% of the US adult population, or more than 7.5 million adults: https://jamanetwork.com/journals/jamadermatology/article-abstract/2781378. Alexander Egeberg and colleagues have recently examined the test-retest accuracy of questionnaires on psoriasis and atopic dermatitis for measuring prevalence in an adult population. This study found that asking people about a history of psoriasis may be useful for assessing psoriasis prevalence, but a questionnaire does not appear to be a reliable method for assessing atopic dermatitis prevalence among adults: https://jamanetwork.com/journals/jamadermatology/article-abstract/2781705

Finally, Alex Trafford, one of our GPA PhD students, has recently published a new study examining the concordance and timing of cancer recording between primary care, hospital and death registration data for people with psoriasis: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0254661. This study underpins our programme of work examining cancer incidence and mortality in people with psoriasis that we will report on later in the year involving cohort studies conducted in Denmark, Israel, Taiwan and the United Kingdom. We are very grateful for the valuable contributions made by all our international collaborators to make this work possible.

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 and photographs, 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 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

The purpose of the GPA survey 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

Over the past few months, PD Dr Maul and GPA Programme Manager, Rebekah Swan, have participated in individual calls with many of our Regional and National Coordinators in order to provide guidance on the planned rollout of the GPA survey and to collect feedback on the tool. During this important phase of work, we are asking our Regional Coordinators to work with us to identify National Coordinators in their regions who can assist with dissemination of the surveys, thus widening the GPA research network. We would like to thank you for your engagement with this process and for your hard work in identifying potential National Coordinators in your regions. This is a truly exciting phase of work and we are delighted by the response globally, especially in the African region. We would like to take this opportunity to thank Professor Ncoza Dlova for her efforts to identify colleagues with an interest in the work of the GPA.

PD Dr Maul is in the process of providing information to our colleagues regarding the ethical approval process and we will be in contact again once PD Dr Maul has finished revising the tool based on the feedback received. If you require any further information, or would like to arrange a call please contact: Rebekah.swan@manchester.ac.uk

As the African continent Regional Coordinator, I am pleased to state that we have been able to garner a lot of interest from our dermatology colleagues in Africa. We had virtual meetings wherein the leadership of the GPA were able to meet with the African interest group, introduce the concept of GPA and how we plan to embark on the contemplated work in Africa.

We had more than 7 African countries showing interest in the psoriasis epidemiological studies, including South Africa, Nigeria, Senegal, Madagascar and Tanzania. All the dermatologists found the GPA initiative to be an excellent project as it creates opportunities for epidemiological data on psoriasis to be established in countries where there are limited resources and funding for such research would otherwise be limited. This was also seen to generate opportunities for our residents and young consultants to pursue their masters and doctoral studies using the same database that would be created.