Data Analyst

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To apply for this position please email your CV to

Birmingham, Bristol, Leeds, London, Manchester

Application Deadline

We have an exciting new opportunity, not to be missed! At DEBRA we are currently looking for an Epidermolysis Bullosa - Data Analyst to join our team based in either London, Birmingham, Bristol, Manchester, or Leeds. The successful candidate will join us on a two-year fixed term basis working 37.5 hours per week and will receive a competitive salary of up to £50,056 per annum.

Job Advert

We are looking for a dedicated data analyst with a strong statistical background and experience in curating, analysing, interpreting, and presenting routinely collected data, to work on important epidemiological projects on Epidermolysis Bullosa (EB), an incredibly painful genetic skin blistering condition. It causes the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, it’s often referred to as ‘butterfly skin’. People living with EB live in constant debilitating pain and in severe cases it can be fatal. This is an exciting opportunity to work with DEBRA in collaboration with the NHS England National Disease Registration Service.

DEBRA is the national charity and patient support organisation for people living with EB. DEBRA supports research programmes that aim to find treatments that will stop and/or slow the progression of EB and works with the EB community, healthcare, and other professionals to improve quality of life for people living with EB.

As an NHS organisation, the National Disease Registration Service (NDRS) collects patient data on cancer, congenital anomalies, and rare diseases, and provides expert, timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England.

The post will take a lead on improving ascertainment of epidermolysis bullosa using the national data in analyses and publications to advance the understanding of EB and underpin improvements in EB care and outcomes.

Analysis of the national EB data is likely to include:

  • Calculating crude, European age standard rates (EASR), age-specific rates and survival for EB
  • Calculate the live birth prevalence of EB in total and according to sub-type, by year, baby sex, maternal ethnicity, deprivation, and geographic region of England.
  • Description of genetic data – including service provision and diagnostic findings
  • Description of co-morbidities, treatment
  • Calculate mortality rates and survival time for babies born with EB


The post holder will be responsible for liaising with data providers, curating incoming data from multiple data sources, evaluating the quality of data, and delivering analyses of EB data by developing, quality assuring, promoting and disseminating focused outputs, products and reports, in line with the agreed DEBRA programme of work, and in response to urgent requirements. The main responsibilities for this role are:

  • Data collection
  • Data Management
  • Stakeholder liaison
  • Information Governance

We do not hold a UK Sponsorship Licence; candidates must be eligible to reside and work in the UK.

Please send a CV and cover letter to Sagair Hussain, Director of Research: (via the ‘Apply’ button). Unfortunately, we cannot consider applications without a cover letter.


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