SUMMARY OF RESEARCH BEING UNDERTAKEN
The EB Service in
Birmingham:
Because of a high concentration of serious forms of EB among ethnic minorities in
Birmingham, BCH has long been a focus for care of EB. In 1994 Dr Moss established the
paediatric EB clinic at BCH, with outreach support from Great Ormond Street Hospital
(GOSH). In 2001 Celia Moss, David Atherton at GOSH and Robin Eady at St Thomas’s,
with the support of DebRA, applied successfully to the National Specialist Commissioning
Advisory Group (NSCAG) for central funding for a national EB service based in London and
Birmingham. This funding, available from April 2002, consolidated the multidisciplinary
service at BCH and paid for EB specialist nurses. Funding for the adult EB service at
Solihull Hospital became available later. Currently about 30 children with severe EB and
40 children with milder EB, living in the West Midlands and North of England, are cared
for by the BCH team, as well as about 6 babies per year with the lethal type. The new
NSCAG service interacts closely with DebRA. NSCAG funding does not cover junior doctors.
Role of Clinical Fellow
NSCAG currently collects separate reports from the four UK EB centres, but will require
pooled data. Therefore NSCAG is funding the development of a web-based EB database. This
provides an exciting opportunity to create a comprehensive, longitudinal database on all
aspects of EB, which will be of immense value in clinical management and research, as well
as generating activity and audit reports for NSCAG. Progress has been slow because of
pressures on Dr Moss’s time, but a prototype has been developed.
Further work to develop, establish and utilise the database is the central role of the
DebRA Dermatology Clinical Fellowship in Birmingham. This fellowship will encourage able
young dermatologists to develop an interest in EB, thus broadening the expertise available
nationally. It will provide support to Drs Moss and Heagerty in developing EB projects
which otherwise they are too busy to undertake. The database project will be an
opportunity to build on the survey data of Mavis Hartley, to document the UK EB
population, to define protocols of best practice, and to undertake clinical research.
Job-plan:
Attend regular EB clinics at
Solihull on Mondays and BCH on Wednesdays.
Participate in day-to-day
running of the Birmingham EB service.
Provide clinical input to the
national database for EB. This is already being developed as an essential part of the
National DoH-funded EB service. Additional work is required to define outcome measures,
pilot the prototype, introduce it to clinical staff in all centres, and organise data
entry, particularly historical diagnostic information.
Use the database to define the
UK EB population, and initiate research and audit projects.
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