Patients in Research
Patients are the driving force behind everything we do, and working in partnership with them throughout the research process ensures we ask relevant questions and produce high-quality evidence.
We strive to meet with the National Standards for Public Involvement developed by the NIHR. We have also recently joined the local Sharebank group to share training and development resources in this area.
"I am not a scientist or a doctor but I bring my experience and perspective as a member of the public and as a person who has a skin disease. My contribution, however small, is valued. If you care about skin diseases and their treatment, get involved."
Maxine Whitton MBE, a member of the CEBD patient panel.
Want to keep up-to-date with our research and hear about opportunities to get involved? Read our CEBD Blog
CEBD Patient Panel
Our surveys & trials
These studies and surveys are currently ongoing and are looking for participants.
Click the links to find out more - including details of how to take part:
Pemphigus and Pemphigoid
The second round survey of the Treatment of Pemphigus and Pemphigoid Priority Setting Partnership is now open!
Frequently Asked Questions about research
1. What is clinical research?
Clinical research helps us to understand how to diagnose, treat, cure or prevent disease. The main aims of clinical research are to:
- provide the best advice and treatments for patients
- share knowledge and learning
- increase understanding of health and disease
- improve patient care
The Centre of Evidence Based Dermatology (CEBD) is involved in two areas of clinical research--Clinical Trials and Cochrane Systematic Reviews. (Read more about clinical research methods .)
2. What is a clinical trial?
Before being used in practice, new treatments must be very carefully tested so that the effects on patients can be more fully understood.
Clinical trials using volunteers are the best way to assess whether new treatments are safe, what the side effects could be and if they are more effective than existing treatments. The new treatment may not be testing a new drug, but rather testing a drug to treat a condition it hasn’t been used to treat before.
Clinical trials show the risks and benefits of interventions and treatments such as surgery, medicines or radiotherapy by comparing them with the current standard treatment or a dummy drug ie a 'placebo'. The treatments are given to patients or healthy volunteers and the researchers then observe and record any differences in their effects over time.
Most clinical trials are randomised controlled trials (RCTs). These are designed to compare two or more treatments as fairly as possible, by allocating different treatments to participants on a random basis to reduce the likelihood of bias in a trial.
3. What is a Cochrane Systematic Review?
Cochrane Systematic Reviews identify and explore research based evidence (usually in the form of clinical trials) for and against the effectiveness and appropriateness of treatments. They present the results in an accessible format for health care providers, consumers, researchers and policy makers so that relevant information is easy to find.
Teams involved in writing Cochrane Systematic Reviews are careful to look at the results of all studies in an area (both published and unpublished) no matter what the outcome of the studies or where in the world they were carried out. The teams are usually made up of health care professionals, medical researchers and consumers. Looking at research evidence in this way means that it is easier to see the bigger picture and work out which treatments really work the best.
Cochrane Systematic Reviews are published quarterly via The Cochrane Library and plain English summaries of the review are often published alongside them. Once published, Cochrane Systematic Reviews are updated every few years to make sure that new studies in the area of interest are considered. The Cochrane Collaboration consists of over 50 collaborative review groups covering most medical specialities.
4. Why should I get involved?
For patients and carers, the benefits of getting involved include:
- gaining new skills and understanding about skin disease through free training courses
- sharing your experiences in a positive way with others in similar situations
- participating actively in improving treatments for patients with skin disease
5. I have never taken part in clinical research. Where can I get more information?
6. How do I get involved in CEBD research?
You could join our Patient Panel and become involved in a variety of activities including:
- helping to identify research areas that are relevant and important
- helping to design research studies by giving your perspective as a patient or carer
- writing information for patients taking part in our studies
- assisting with interpreting study results
- becoming involved in helping to write a Cochrane Systematic Review
- promoting the work of CEBD in your community
- helping to write plain English summaries of research study results
- supporting those new to research if you have been involved in the past
You could also participate in research through the Cochrane Skin Group, which has always had strong involvement from patients and carers.
Listen to a podcast by one of our patient researchers, Maxine Whitton.
7. Where can I obtain more information about skin disorders?
Many excellent on-line resources are available for patients with skin disorders, these include:
- Patient Information Leaflets from the British Association of Dermatologists website
- NHS Evidence although intended for healthcare professionals, this electronic resource is also available to patients.
- CEBD resources page which contains resources created by us and links to resources created by others
8. Where can I get help or support in the treatment of skin disease?
Unfortunately, we are unable to provide help or information regarding the treatment of skin disease. If this is what you are looking for, it may be more helpful for you to contact the relevant patient support group or information sites, a number of which are listed below:
- Alopecia UK
- Cancer Research UK
- Changing Faces
- The National Eczema Society
- Ichthyosis Support Group
- Lymphoedema Support Group
- Pemphigus Vulgaris Network
- Psoriasis Association
- Skin Care Campaign
- Vitiligo Society
For healthcare professionals (click here)