RecruitingOBSERVATIONAL

International Rare And Severe Psoriasis Expert Network

This study is called the International Rare And Severe Psoriasis Expert Network (IRASPEN). It's all about a skin condition known as Pustular Psoriasis (PP). We're following people with PP for five years to see how the condition progresses naturally and how it responds to treatments they're already receiving. We'll collect information, photos, and some biological samples to learn more about the different types of PP, how often flare-ups happen, how severe they are, and what makes them better or worse. This helps us get a clearer picture of living with PP and aims to improve future care. This study does not involve new medicines; it observes existing treatments.

At a glance

Status

Recruiting

Sponsor

University Hospital, Basel, Switzerland

Enrolment target

180

Start

22 Sep 2021

Estimated completion

01 Dec 2030

Pustular Psoriasis (PP)

What is this study about?

Imagine a skin condition where you get small, pus-filled bumps (pustules) on your skin. That's Pustular Psoriasis (PP). It can be uncomfortable and sometimes quite severe. The International Rare And Severe Psoriasis Expert Network (IRASPEN) is a study designed to better understand this condition. We know PP can affect people in different ways, and new information is always emerging.

This study is like keeping a detailed diary of participants' experiences over five years. Doctors will observe how the condition changes over time, how different treatments (that you'd be taking anyway) affect it, and how often and severely flare-ups occur. They'll also take samples like blood or saliva (biological sampling) and photographs of the affected skin. This helps scientists understand the condition more deeply, identify patterns, and find out what works best for different types of PP. The aim isn't to test new medicines, but to learn from what's already happening in real life.

By gathering information from many people across different areas, this study will create a much clearer picture of Pustular Psoriasis. This knowledge is really important because it helps scientists and doctors understand the condition better, which can lead to improved ways of diagnosing it, managing symptoms, and ultimately, better quality of life for people living with Pustular Psoriasis.

Key takeaways

This study helps understand Pustular Psoriasis over 5 years.
It observes how your condition changes and responds to current treatments.
No new medicines are given; it's about learning from what happens naturally.
Information, photos, and some samples will be collected.
Your participation helps improve care for others with PP in the future.
You can leave the study at any time without affecting your care.

Who may be eligible?

To join this study, first, a skin specialist (dermatologist) must have confirmed you have Pustular Psoriasis (PP). This includes several types like GPP, PPP, or ACH. You must have had active pustules (the small, pus-filled bumps) on your skin at some point in the six months before you join, even if they're not active right at the time of joining.

You need to be able to understand the study information and give your agreement to participate. We welcome adults (18 years or older), and for some participants, close adult relatives like a parent or sibling might also be asked to join to provide a DNA sample, though this isn't essential for you to be included.

There are not many reasons why you couldn't join. Generally, if your doctor thinks you wouldn't be able to stay in the study for the full five years because of another health issue, or if you're unable to give your informed agreement, then you wouldn't be able to take part. This study also includes children from 6 months old, but for adults, the ability to consent is key.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I have a confirmed diagnosis of Pustular Psoriasis from a skin specialist?
Did I have active pustules on my skin within the last six months?
Am I able to understand the study information and give my consent?
Am I generally healthy enough to participate for five years, as judged by my doctor?
Am I 18 years old or older? (Children from 6 months can be included too, but the consent process is different).

Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll be joining a study that follows your health for up to five years. This is an 'observational' study, meaning you won't be given new or experimental medications. Instead, your doctors will simply record information about your Pustular Psoriasis and the treatments you're already receiving as part of your standard care.

During your regular doctor's appointments, the study team will collect information about your symptoms, any flare-ups you've had, and how your current treatments are working. This might involve taking photographs of your skin, and possibly collecting samples like blood, saliva, or small skin biopsies, if this is something you agree to. These samples help researchers understand the condition at a deeper level. The exact number of visits will depend on your usual medical care, as the study largely uses information from those routine appointments.

Potential risks and benefits

Participating in this study might help improve the understanding of Pustular Psoriasis for future patients. You might also find it helpful to have your condition closely monitored. The main 'risks' are minor and related to the procedures involved; for example, giving blood samples might cause a little discomfort or bruising. Taking photos of your skin is generally harmless. There’s also the time commitment involved. Remember, you can choose to leave the study at any time, for any reason, without it affecting your medical care.

Locations (8)

Klinikum der Universität München
Verified postcode
München, Germany· Recruiting
Fondazione Policlinico Universitario "Agostino Gemelli" IRCCS
Verified postcode
Rome, Italy· Recruiting
Universitário do Porto
Verified postcode
Porto, Portugal· Recruiting
National Skin Centre
Verified postcode
Singapore, Singapore· Recruiting
Dermatology, University Hospital Basel
Verified postcode
Basel, Switzerland· Recruiting
University Hospital Zürich
Verified postcode
Zurich, Switzerland· Recruiting
Akdeniz University School of Medicine; Department of Dermatology and Venereology
Verified postcode
Antalya, Turkey (Türkiye)· Recruiting
Trakya University, Faculty of Medicine; Department of Dermatology and Venereology
Verified postcode
Edirne, Turkey (Türkiye)· Recruiting

Common questions

What is Pustular Psoriasis?

It's a skin condition where you get pus-filled bumps (pustules) on your skin. It can sometimes affect larger areas or just certain parts of the body.

Will I get new medicine in this study?

No, this study doesn't test new medicines. It observes how your Pustular Psoriasis changes and responds to the treatments you're already taking.

How long will I be in the study?

The study aims to follow participants for about five years to see how the condition progresses over time.

What kind of information will be collected?

Doctors will record your symptoms, flare-ups, how your treatments are working, and may take photos and some biological samples like blood or saliva.

Can my family join too?

Yes, sometimes adult relatives (like parents or siblings) might be asked to provide a DNA sample, but this isn't required for you to participate.

How to find out more

Alexander Navarini, Prof. Dr. med. Dr. sc. nat.

alexander.navarini@usb.ch +41 61 328 60 80 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.