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  • Participate in research
  1. Home
  2. Participate in research

Participate in research

Netherton syndrome Clinical Trials

Netherton syndrome Clinical Trials

Quoin Pharmaceuticals Ltd. is a clinical stage specialty pharmaceutical company. QRX003 is currently being tested in two separate clinical trials Read more

Published: 5th May, 2023

Updated: 13th December, 2023

Author: Mandy Aldwin

A Needs Assessment Tool for Caregivers of Children with Ichthyosis

A Needs Assessment Tool for Caregivers of Children with Ichthyosis

Carleen Walsh, PhD Researcher invites caregivers of children affected by ichthyosis to test a new needs assessment e-tool to make sure it is reliable and valid. Read more

Published: 27th July, 2021

Updated: 10th November, 2021

Author: Mandy Aldwin

Mental Health of Individuals With Facial Differences

Mental Health of Individuals With Facial Differences

Participants requested for a study to investigate whether the mental health of those with facial differences is affected by the way they interpret the negative reactions of others. Read more

Published: 31st July, 2020

Updated: 30th March, 2021

Author: Liz Dale

Body Image Dissatisfaction

Body Image Dissatisfaction

Participants needed for a study exploring experiences and body image dissatisfaction in association with dermatological conditions including ichthyosis. Read more

Published: 28th May, 2020

Updated: 30th March, 2021

Author: Liz Dale

A comparison of symptoms of distress and associated risk factors in XLI, IV and psoriasis

A comparison of symptoms of distress and associated risk factors in XLI, IV and psoriasis

Participants needed for a study which aims to better understand the frequency and severity of distress associated with these conditions, and to try and understand what might contribute to this. Read more

Published: 19th February, 2021

Updated: 30th March, 2021

Author: Mandy Aldwin

Lamellar ichthyosis research

Lamellar ichthyosis research

A clinical trial has started in the UK for Lamellar ichthyosis, initially for adults over 18. Read more

Published: 5th May, 2020

Updated: 28th May, 2020

Author: Mandy Aldwin

Research Study for Ichthyosis Caregivers

Research Study for Ichthyosis Caregivers

Your input is needed to develop a first needs assessment tool for ichthyosis caregivers. Read more

Published: 5th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Does your skin condition affect your confidence?

Does your skin condition affect your confidence?

Study investigating if confidence in social situations is affected by your visible skin difference. Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

X linked ichthyosis personality survey

X linked ichthyosis personality survey

Researchers are looking for males with X linked ichthyosis or their non affected brothers to take part in a short online survey looking at personality. Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Emotional and Psychological effects of living with a skin condition

Emotional and Psychological effects of living with a skin condition

Living with a skin condition is difficult, but how many people acknowledge the emotional and psychological impact it has on the person affected and their loved ones? Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Visible Difference, Intimacy and Relationships

Visible Difference, Intimacy and Relationships

Researchers at the Centre for Appearance Research are conducting a research study examining the experiences of intimacy amongst people who have visible difference. Read more

Published: 6th May, 2020

Updated: 22nd May, 2020

Author: Mandy Aldwin

X Linked Ichthyosis Research – Female carriers wanted!

X Linked Ichthyosis Research – Female carriers wanted!

Researchers at Cardiff University are looking for female carriers of genetic changes associated with X-linked ichthyosis (XLI) to take part in a short online survey looking at personality and mental health. Read more

Published: 6th May, 2020

Updated: 22nd May, 2020

Author: Mandy Aldwin

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Latest

  • Faces of Ichthyosis: Paige

    Faces of Ichthyosis: Paige

    Explore Paige's journey with ichthyosis, embracing individuality and strength while overcoming life's challenges.

  • Faces of Ichthyosis: Elliot

    Faces of Ichthyosis: Elliot

    Elliot’s story highlights the resilience needed to live with ichthyosis and the challenges of daily skin care. He hopes people will look beyond his skin and better understand the impact of the condition.

  • Faces of Ichthyosis: Anthony

    Faces of Ichthyosis: Anthony

    Anthony’s story is one of determination, honesty, and quiet strength - showing that ichthyosis may shape daily life, but it doesn’t limit what’s possible.

  • Faces of Ichthyosis: Rosemary

    Faces of Ichthyosis: Rosemary

    Rosemary’s story is raw, direct, and deeply human - reminding us that behind every visible difference is a life just as rich, complex, and worthy of connection as any other.

Most read

  • Treatments Used in Ichthyosis

  • Palmoplantar Keratoderma (PPK)

  • X-linked Ichthyosis

  • Vitamin D

    Vitamin D

    Vitamin D is a vitamin which is essential for our health and well-being. Individuals with ichthyosis, in particular ARCI, including CIE/lamellar/harlequin ichthyosis, and epidermolytic ichthyosis, are at risk of Vitamin D deficiency.

  • Harlequin Ichthyosis

  • Inheritance of Ichthyosis Factsheet

  • Ichthyosis Overview

  • Eye Management in Ichthyosis

  • Udrate Cream

    We have received information about a new product similar to the discontinued Calmurid, and the following is for your information and guidance.

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

This article explains the recent changes in how we name some inherited skin conditions. This includes conditions like the ichthyoses and palmoplantar keratodermas. Read more

Published: 3rd September, 2025

Updated: 4th October, 2025

Author: Mandy Aldwin

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