Patient with bandaged hand.

You can become more involved in DEBRA UK, the research we fund and external research opportunities:

• Patient Public Involvement (PPI)
• External opportunities
• Become a member
• Clinical trials
• The Science behind EB
• Donate

 

Patient Public Involvement (PPI)

It is important to us to hear the voices of families living with EB to help us decide which research projects to fund. This can be general comments about EB research but we may also ask you for your thoughts on specific funding applications under consideration each year. 

You don’t need to have a science background. We want a variety of people from across the country with experiences of different types of EB to take part, so that our decisions represent as many people living with EB as possible.

Reviewing a research funding summary application can be done online using a short form that will be emailed to you. It should take no more than 15 minutes depending on how long a comment you choose to write but there is the option just to leave a score if you prefer to keep it simple.

We also provide the opportunity to get together online with other members interested in EB research to go through this process and talk about the latest EB research. 

If you would like to be involved, have thoughts to share about  our research or would be happy for us to contact you to ask for your opinion on what research we fund, please leave your details and/or feedback here.

 

External opportunities

Our members can contribute to research outside of DEBRA. We will provide information here on projects that are not run by DEBRA, but by external organisations such as academic research departments.

• New national youth forum (British Society for Paediatric and Adolescent Dermatology and British Association of Dermatology) 
• Development of an app to detect RDEB SSC from photographs (Northwestern University)
• Members of the public are welcome to observe the meetings of the National Institute of Health and Care Excellence (NICE) Advisory Committee, so that they can see how the decisions are made about which treatments are funded on the NHS. We will let members know when these committee meetings are taking place for potential EB treatments.

You may also want to visit the National Institute for Health and Care Research (NIHR) to find out about health and social care research taking place in England, Northern Ireland, Scotland and Wales.

 

RHEACELL's stem cell clinical trial

RHEACELL, a German biopharmaceutical company who specialise in innovative stem cell therapies, is currently running a clinical trial exploring a potential stem cell therapy which could promote wound healing for people living with EB.

To date, they have completed a human phase 2a clinical trial, with the principal purpose of determining the efficacy and safety of the treatment. This stage of the clinical trial was completed with 16 patients who have recessive dystrophic epidermolysis bullosa, and RHEACELL claim this stage of the trial proved the general anti-inflammatory effect of the therapy and demonstrated a significant reduction in the number and severity of wounds. They are now actively recruiting for stage 3 of this clinical trial, which is designed to substantiate the benefit-risk profile with a larger patient population. They are specifically looking for patients (children and adults) with a confirmed diagnosis of recessive dystrophic EB (RDEB) or junctional EB (JEB).

For more information about this clinical trial or to register your interest, please visit RHEACELL's EB trial page.

 
Become a member 

Membership of DEBRA UK provides opportunities to get more involved in our research funding decisions. Members will be updated on our research progress and invited to presentations from the researchers we fund at events such as Members’ Weekends.

Become a member

Clinical trials

To find out about specific research studies that you could be involved in, please talk to your own specialist doctor or nurse. Many trials will have specific criteria for participants such as type of EB, age or requirements around other therapies you might currently be using. By participating in a trial you are helping EB research to progress and may also gain access to experimental therapies. However, it is important to understand all the potential harms as well as benefits when deciding whether to participate or not. The decision to take part is always yours and you can withdraw from a research study at any time without giving any reason.

Find out more about clinical trials

 
Donate

It costs a great deal of money to pay experienced doctors, nurses and scientists to carry out research projects and to obtain the resources and equipment they need but even the smallest donation helps. Just as individual researchers may feel that their contribution is one small brick in the large wall of a cathedral of knowledge, any and all funds donated add up to bring us nearer to a future where nobody suffers from EB.

Donate

 

 
Science behind EB

To get more involved in EB research, it can help to be reminded about some of the science and scientific terms used when discussing EB research. Researchers will talk about genes and proteins, the layers of our skin and how our immune systems are involved in EB but it can be difficult to follow without an explanation of some of the terms being used.

Find out more about the science behind EB

 

Image credit: 1601109, by David Brown. Licensed under CC0 Public Domain.