One of the aims of The Lee Spark Necrotising Fasciitis (NF) Foundation is to help the medical profession gain a better understanding of how NF develops, how it can be identified early, and how it can be treated.
We have been selected to be part of a five year EU programme working with seven European countries. The name of the project INFECT.
This EU project aims at applying a systems medicine approach to elucidate the complex host and pathogen signatures that dictate severe bacterial tissue infections.
INFECT aims to substantially contribute to the systems understanding of the pathophysiology of highly lethal destructive tissue infections, I.e. necrotising fasciitis and other necrotising soft tissue infections (NSTIs).
Despite significant advances in the field of NSTIs with defined virulence or host factors being identified as pivotal mediators contributing to disease outcome, the results have proven to be of limited clinical use and it is apparent that there remains a major gap between this new knowledge and clinical utility/benefit to patients. Part of this gap is likely because target responses have been analysed in isolation rather than within physiological networks, plus the fact that clinical data are often ignored in experimental mechanistic studies. INFECT proposes to overcome this knowledge gap through a solid systems biology approach in patients and clinically relevant systems, thereby significantly advancing our understanding of the pathophysiology that contributes to severity and outcome of NSTI. We aim, furthermore, to set the basis for the translation of this understanding into rapid diagnostics and improved, tailored clinical practice by working jointly with clinicians, a diagnostics SME and a patient organisation.
INFECT is based on a consortium consisting of 14 international partners, that has joined forces to employ a new strategy to advance our understanding of the pathogenesis of NSTIs; thereby improve identification and management of patients and promote novel developments in therapeutics and diagnostics of NSTIs. The project is divided into 9 different Work Packages (WP1-9). This includes seven scientific work packages (WPs 1, 2,3, 4, 5, 6 and 7) combined with one dissemination work package (WP8) and one management work package (WP9).
Researchers at Public Health England, the University of Oxford and Imperial College London would like to invite you to take part in a research study investigating severe streptococcal infections and necrotising fasciitis in adults and children in the UK. They have designed the research, which will run over the next few months, with the help of the Lee Spark NF Foundation.
There’s an opportunity to participate in a genetics research study and the researchers would also really like you to complete a survey to help us design future research projects. Here’s a summary of the most important information:
- You can take part in the genetics study if:
- you are a survivor of a severe streptococcal infection or necrotising fasciitis;
- your illness happened anytime since 1st January 1980;
- at the time of your illness you were admitted to a hospital in England, Wales or Northern Ireland;
- you are living in the UK (including Scotland) today.
- Some relatives of survivors will also be able to take part in the genetics study. However, the survivor must agree to participate first and therefore relatives who are interested in participating should first encourage that survivor to do so.
- Taking part in the genetics study is straightforward. It won’t cost you anything and it shouldn’t use up too much of your time.
- Whether or not you are taking part in the genetics study we would like you to complete the survey.
Please visit the website www.strepgene.org to find out more.
We are proud to announce the results to date of the Strep Gene Study. (PHE Imperial College London. Oxford & Cambridge University The Welcome Trust and ourselves The Lee Spark NF Foundation).
With the help of the survivors and their families who participated in the study , doctors and scientists working on the Strep Gene Study have been trying to understand why some individuals develop necrotising fasciiitis and other severe streptococcal infections
The researchers having been using a number of approaches but one that has been useful involves looking at markers on the outside cells which help the body develop immunity from infections. These markers are called HLA modules and are involved in why people develop a wide range of diseases involving the immune system such as type 1 diabetes and coeliac disease. Importantly the body’s blueprint for these HLA markers called genes differ from one individual to the other and some of these differences have been shown to increase the risk of developing certain diseases.
Following up on research done over a decade ago, the Strep Gene reseachers have now found that a particular difference in one of these HLA markers called HLA-DQA1 occurs twice as often in patients who have suffered life-threatening group A streptococcal infection compared to the general population. To make sure this result was not a chance observation they repeated their analysis in several different ways and found the same thing. Importantly, the HLA-DQA1 marker is known to interact with particular toxins produced by the strep bacteria and so the researchers suggest that those individuals with the HLA-DQA1 difference do not develop immunity in the same way as everybody else which makes them more vulnerable to life-threatening infections. Further research will be needed to test this theory, but it could provide important information about why some individuals develop strep infections and how to prevent through vaccines.
The Strep Gene team have now released their findings to the wider scientific community and will present and get feedback on the results at the European Society of Clinical Microbiology and Infectious Diseases later this year (2019) which will help guide the next steps. The researchers remain extremely grateful to The Lee Spark NF Foundation and especially to the survivors and their families who participated in the study without them whom the study would not have been possible
Please visit the website www.strepgene.org to find out more.