DEBRA, a UK national medical research charity and patient support organisation for people living with EB, has extended its partnership with NHS England with the launch of a new initiative working with their National Disease Registration Service to analyse and study healthcare data from patients living with all types of EB.

The objective of this important new initiative is to increase collective understanding of EB, a group of rare, extremely painful, genetic skin conditions, that cause the skin to blister and tear at the slightest touch.

As part of this new study, DEBRA has recruited a dedicated Senior Data Analyst who will work with NHS England to study EB patient information from NHS records to find out more about the facts and figures of EB, and how the NHS currently provides healthcare to people living with all types of EB. It is hoped that better access to and understanding of EB patient data will help answer the most important research questions for the EB community.

Through data analysis DEBRA aims to use the results to help raise awareness of EB by providing clear facts and figures to GPs, patients and their carers, government, and the public, information that can also be used to help garner support. The data recorded will enable a better understanding of the frequency, nature, causes and outcomes of the different types of inherited EB which will support researchers and the pharmaceutical industry working on the cause, prevention, diagnosis, treatment, and management of EB symptoms, to improve patient care and outcomes.

Commenting on this important new partnership, DEBRA Director of Research, Dr Sagair Hussain said:

“We are pleased to be extending our relationship with the NHS England. We already work in partnership to deliver specialist EB healthcare services through the EB healthcare centres of excellence, and now with this new partnership we will have better access to reliable information about the care and outcome for EB patients which will be invaluable to us, helping to increase our understanding of the condition, furthering our case for support, and helping us define the EB research priorities to ensure our research strategy is fully in-line with the needs of the EB community ”.   

Commenting on this important new partnership, Dr Steven Hardy, Head of Genomics and Rare Diseases for the National Disease Registration Service at NHS England, said:

“We are delighted to be working closely with DEBRA to support the epidermolysis bullosa community. This exciting project will improve the collection and analysis of routine healthcare data to produce intelligence that supports patients and their families with this condition, as well as clinicians and researchers.

Working in partnership with DEBRA will allow us to answer important questions for the EB community and help shape the future research strategy.”

Find out more about EB and the work that DEBRA does to support the UK EB community at www.debra.org.uk

Find out more about the National Disease Registration Service at www.digital.nhs.uk/ndrs

About EB

Epidermolysis bullosa (EB) is a group of rare and incredibly painful genetic skin blistering conditions affecting an estimated 5,000 people in the UK and 500,000 globally. EB causes the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wing it is often referred to as ‘butterfly skin’. EB can affect the hands and feet only or in the most severe cases any part of the body, including blistering on the eyes and internal organs. People living with EB live in constant debilitating pain. EB is currently incurable and in severe cases it can be fatal.

About DEBRA

DEBRA is a UK national medical research charity and patient support organisation for people living with or directly affected by EB. DEBRA relies on the income generated by its charity shops and fundraising activities to provide care and support for people living with EB, and to fund pioneering research to find effective treatments for every type of inherited EB.

About  National Disease Registration Service (NHS England)

The National Disease Registration Service (NDRS) is an international leader in population-based disease registration services, real-world clinical data, quality assurance, surveillance, analysis and monitoring. NDRS includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) population-based registers, with strong clinical engagement and subject matter expertise with significant skills in data science, public health analytics and complex data processing systems

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