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How EB clinical trials work

A doctor speaks with a smiling child and woman, backgrounded by DNA helix graphics. A doctor in a white coat and gloves talks to a smiling girl and an adult. DNA strand illustrations are in the background.

EB clinical trials provide evidence that new or repurposed treatments will be safe and more effective than anything already in use to reduce EB symptoms including pain and itch.  

We award a proportion of the money raised by our supporters to researchers whose proposals are approved by our rigorous application process, but we do not run EB clinical trials ourselves and cannot make any recommendations that you join one. The only way to join an EB clinical trial is through your doctor or EB clinician. 

EB clinical trials may also be funded by other charities or companies and DEBRA UK members and other members of the EB community living with EB can choose to participate in whichever trial they are eligible for. 

For each EB clinical trial, there will be a list of ‘eligibility criteria’ that will be different for each trial. These may include:  

  • being a certain age and sex 
  • having a certain, genetically diagnosed, type of EB or even a specific genetic change 
  • being able to attend a specific centre or clinic 
  • having certain EB symptoms to a defined level of severity 

Clinical trials recruit a specific number of people and offer treatment for a specific length of time. Often people will join at different times rather than all starting together. So, a trial that involves treatment for 12 people for 8 weeks each may take longer than 8 weeks for everyone to complete. There will often be a follow up appointment after the experimental treatment has finished. 

Information about clinical trials from the NHS

To find out about EB clinical trial opportunities, please talk to your doctor or EB clinician, they will be able to share with you any current opportunities and they can help you join an appropriate trial should there be one suitable for you that is currently recruiting for participants. 

Take part in current EB clinical trials

 

There may be potential benefits but also potential risks that you should take into consideration before agreeing to take part in an EB clinical trial or research project. Please be reassured though that you can withdraw from a clinical trial or research project at any point without giving a reason, no matter what you have agreed to do, or the consent forms you may have signed. 

Please see below for some of the potential benefits and risks associated with participating in a clinical trial. 

 

A potential benefit of participating in an EB clinical trial or research project may be that you can try out something new that improves your symptoms. However, many trials will have a ‘control group’ of participants who do not receive the new treatment and act as a comparison group to see whether those receiving the new treatment really do benefit. It is also possible that the new treatment might not help at all or may even make your symptoms worse.  

 

You may give up your time to travel and take part in research without seeing any personal benefits. Travel and any accommodation costs may be covered by the company conducting the trial, but you are likely to give your time for free. There is no guarantee that the results of the trial will prove that a new treatment works and should be made available to others. The trial may show that the potential treatment is not effective. This is also valuable as it will save patients in the future from wasting time and money on something that doesn’t work, but you will not have experienced personal benefit. 

 

By participating in an EB clinical trial, you may require additional medical appointments. You may experience discomfort or pain when giving samples for research beyond what was necessary for your personal treatment, although ideally research will be combined with your routine visits. Participation may mean additional contact with specialist healthcare professionals and extra opportunities for health checks. 

 

You may find that being asked to share your experiences, or your child’s experiences of living with EB brings feelings of sadness or anxiety to the forefront of your mind. However, remember you (or your child) are under no obligation to complete your participation in an EB clinical trial or research project; you can withdraw at any point without giving a reason even after you have signed consent forms. 

 

As well as participating in EB clinical trials, there are many other opportunities to get involved in non-clinical research where you can share your experiences of living with EB to help researchers better understand the condition.  

To find out more about current opportunities to participate in non-clinical EB research and PPIE (Patient & Public Involvement and Engagement) projects that can include surveys, questionnaires and workshops, please visit our get involved page

You do not need to speak to your doctor of EB clinician about these opportunities, you can simply read the information sheets supplied by the researchers and choose whether to get involved or not.