UK research study - skin manifestations in CGD and X-linked CGD carriers

The Royal Free Hospital in London is recruiting patient in the UK for a research study to characterise skin complications in CGD and to find out the optimal follow-up and management for CGD patients and carriers of X-linked CGD with skin manifestations

The research study

It has been frequently observed that many CGD patients and carriers of X-linked CGD report skin issues which impact upon their everyday life. However, skin complications in CGD have not been extensively described and characterised.

For this reason, the aim of this project is to provide an overview of skin disease in CGD, focusing on the nature and frequency of different skin conditions as well as their impact on patients’ and carriers’ quality of life. The goal is to develop management and treatment guidelines for skin complications related to CGD.

Furthermore, the research team, headed by Dr David Lowe, Consultant Immunologist at the Royal Free, would like to determine whether differences exist between the microorganisms naturally present in the skin of CGD patients or carriers and the microorganisms present in the skin of household contacts, (those who do not have CGD and are not carriers of the disease but live in similar conditions to the patient/carrier).

What is involved?

The study involves one visit to the Royal Free Hospital. On the day of the visit you will be examined by a Dermatologist and an Immunologist and asked some questions with the help of a skin-related health questionnaire, Dermatology Life Quality Index and the Hospital Anxiety and Depression Scale. Doctors will then take swabs of relevant regions of your skin and use them to try to determine the bacteria and fungi contributing to CGD-associated skin disease.

The research team would appreciate it if you could come to the visit together with one household contact, so that they can do the same procedure with him/her in order to have a comparison to your own skin.

Who is eligible to take part?

To be eligible to take part you need to have a confirmed diagnosis of CGD or status of X-linked CGD carrier. Please note that you will not be able to participate if you have had a successful curative therapy such as bone marrow transplant or gene therapy.

Who should you get in touch with?

If you would like to find out more, please contact Helen Braggins, the CGD Society clinical nurse specialist (helen.braggins@gosh.nhs.uk), Dr David Lowe (david.lowe7@nhs.net) or Carla Arteaga Henriquez (carla.henriquez@nhs.net).

Please note:

The CGD Society is advertising this study in cooperation with the Royal Free Hospital, London and has no liability regarding any adverse events that may result from patient participation.  Please talk through what is involved and the study’s risks and benefits carefully with the research team before giving informed consent.