British Scoliosis
Research
Foundation
Annual Review 2014- 2015
Letter from
the Chairman
Welcome to the BSRF’s annual review for
2014-15. The BSRF council and support
staff have worked hard this year to
achieve our aim of supporting the highest
quality of research into scoliosis and
other spine conditions.
Our funding support has continued from
the Shute Foundation and the Robert Luff
Foundation, the Scoliosis Campaign Fund
and proceeds from the Zorab meeting in
2015. We continue to actively seek new
funding streams.
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The British
Scoliosis Research
Foundation (BSRF) is the
only charity that exists
solely to promote
research into the
treatment of scoliosis
in the UK.
Each year the BSRF
funds research into
scoliosis and periodically
holds an international
symposium to spread the
knowledge gained
from research.
“The BSRF’s vision is to
have contributed, within
10 years, to discovering
the cause of idiopathic
scoliosis and to have
improved the quality of life
for people with all types
of scoliosis.”
2014-15 has been an eventful year for
BSRF, the 14th International Phillip Zorab
Symposium was held at the Royal College
of Surgeons in Edinburgh. The inspiring
programme focused on genetic research,
growth modulation in idiopathic scoliosis
and the benefits of surgery in adolescent
idiopathic
scoliosis. Specialists
came from across the globe
to hear the latest research
into the causes and
treatment of scoliosis
and share knowledge
that can be used to
inform best practice,
broaden understanding
of the condition and
improve patient care.
BSRF is currently funding
pioneering new research to
look for genetic causes of familial
congenital scoliosis. We also have the
results from funded projects such as an
investigation into the effect on the bone and
disc cells of dilute Povidone–Iodine, which is
used to clean wounds after spinal surgery,
so as to inform practice regarding safe
concentrations and exposure times.
BSRF funded research papers have been
presented at national and international
meetings such as the British Scoliosis
Society, and the Scoliosis Research
Society and published in peer-reviewed
academic journals with 2 papers
accepted by Spine in 2015. We believe
the publication of scientific research in
peer reviewed journals is a reflection of the
quality of the research funded.
We hosted the popular International Phillip
Zorab Symposium in Edinburgh in June
2015. This gathered together scientists
and clinicians from diverse backgrounds
all interested in aspects of scoliosis, its
causes, effects and treatments. The next
meeting is planned for 2017.
We have recently undertaken the funding
of a Priority-Setting Partnership project to
establish the ten most pressing priority
areas for scoliosis research. This will
include spine conditions in adults, which
are becoming more actively managed.
Ian Nelson
Chair, BSRF Council
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British Scoliosis Research Foundation Annual Review 2014 - 2015
British Scoliosis Research Foundation Annual Review 2014 - 2015
Our Work
Raising funds to improve lives
There is no other organisation in the UK that focusses solely on funding high-quality
research into scoliosis; therefore it is vitally important that BSRF continues to raise the
necessary funds to support research into this condition if it is to improve the health and
welfare of scoliosis patients.
The Scoliosis Campaign Fund
is a fundraising initiative run in
partnership with the patient support
charity Scoliosis Association (UK). It
encourages and provides resources
for people who wish to support
both charities and raise funds to
provide support and improved
care for scoliosis patients and to
finance research into the causes and
treatment of scoliosis.
BSRF funds research into:
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The cause of, prevention of, and potential
cures for idiopathic scoliosis
The assessment of new forms of
treatment – surgical and otherwise
The encouragement of basic scientific
research that might add to knowledge
of the changes, causal or otherwise, in
idiopathic scoliosis
The support of research by young
surgeons to stimulate an interest in
scoliosis in newly-qualified doctors.
Although treatment exists,
there is currently no
cure for scoliosis and
in the majority of
cases, the cause
remains unknown.
Research is
therefore vital to
find out why this
condition occurs
and whether it can be
prevented.
research into all aspects
of scoliosis.
BSRF funded
research has
provided better
understanding of
both the causes
and treatment of
scoliosis, resulting
in earlier intervention
and better treatment
for patients.
Not only this but research
has led to huge advancements
in scoliosis treatments over the years
allowing patients to better manage their
condition and enjoy much improved quality
of life.
In 2014 and 2015 we
provided funding for ongoing,
exciting new research projects including
a study of correlations between progression
of scoliosis and worsening respiratory
function.
Since BSRF was founded, the charity has
strived to stimulate and fund high-quality
research into the causes and treatments of
scoliosis. Each year, BSRF provides funding,
subject to a formal application and review
process, for those carrying out high-quality
Through BSRF funding Mr M P Newton Ede
provided results of a study to into the effects
of dilute Povidone–Iodine so as to inform
practice regarding safe concentrations and
exposure times.
BSRF receives no government
funding and our fundraisers provide
a vital source of income to allow us
to continue our research into why scoliosis
occurs and treatments that can improve the
quality of life for scoliosis patients.
We want to thank our fantastic fundraisers
for all their support in 2015, we couldn’t
continue without you!
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Zorab Symposium
Every two years the BSRF runs the
International Phillip Zorab Symposium,
the leading basic science scoliosis
conference. The symposium offers
delegates the opportunity to hear the latest
research into the causes and treatment
of scoliosis, which can be used to inform
best practice and improve patient care and
understanding of the condition.
The 2015 IPZS was held over two days at
the Royal College of Surgeons, Edinburgh
and focused on several important aspects
of the condition; genetic
research, growth
modulation in idiopathic
scoliosis, and the benefits
of surgery in adolescent
idiopathic scoliosis
The 2017 IPZS will be
held 15th -16th June, at
One Great George Street
in Westminster,
Central London.
British Scoliosis Research Foundation Annual Review 2014 - 2015
British Scoliosis Research Foundation Annual Review 2014 - 2015
Deidre’s Story
walking home after nights out.
Nobody seemed to put two and two
together that it was my spine causing my
lungs to be squashed.
My previous surgeon didn’t want to fit me
with rods as this would have been a high risk
procedure for a case as complex as mine
and he had a fear of leaving me in a wheel
chair or dead. When my surgeon retired, a
new one took over and
I knew the second I
met him that he would
help me. He told me
he would send me to a
respiratory hospital to
see how bad my
lungs were.
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When I was born my
parents knew something was
wrong and I was rushed to a
that saved her life.
A relatively new
children’s
hospital in Dublin. After
The development of
innovation: MAGEC
extensive tests they told my parents I had the MAGEC system
rods have been a
kyphoscoliosis, which was very rare.
and the continued
much talked about
They
said I wouldn’t live past the age
innovation of
topic after the
of 7 but up until that time I wouldn’t be
scoliosis treatments
National Institute
able to walk and that I’d be in nappies
and surgical
for Health and
until I passed away. At 34 years old;
procedures is a
Care Excellence
I now know how wrong
great example of how
(NICE) stated that the
they were!!
research can help to
MAGEC system should
be considered for children
aged 2 and over with scoliosis,
who need surgery to correct their
curved spine because they avoid the
need for repeated operations to lengthen
the rods.
Last year Deidre McDonnell became the
first adult in the world to be fitted with
MAGEC rods in an innovative procedure
improve treatments and
save lives.
I had my first operation at 6 weeks old
and was constantly in and out of hospital
throughout my life. I missed a lot of school
because of my hospital stays for surgery
or pneumonia- I’ve lost count of how many
times I had it. I started to notice at about 18
or 19 that I’d get slightly out of breath while
When I went to
the hospital the
physiotherapist told
me I would be doing
a 6 minute walking
test. He stopped me
after 2 minutes and
told me my heart and
lungs were terrible and
under severe pressure
and he had a fear I’d
collapse or have a
heart attack. I went
back 3 weeks later for the results and left in
floods of tears. All I remember hearing was
stage 1 respiratory failure, palliative care,
and dead in 10 years. I knew I was maybe
a bit bad but this was a huge shock. Upon
hearing the results, my surgeon decided the
risks were worth it.
It was explained to me that I was getting a
MAGEC rod. This was new, and I think had
only been done in Ireland twice before, and
on children. The odds were against me as
I was 34, my spine was rigid, and it was
fused at the top. My lung function was only
30% and I have severe tachycardia (a fast
heartbeat) so I was not an average day’s
work for an anaesthetist! I was very high risk
before I even got on the operating table.
The morning of the surgery I was a mess. I
remember thinking
that if I didn’t go
ahead with the
operation that I
would die at some
stage from lung
failure, but that if
I did I might die
today. Fast forward
nearly 8 months and
I am a new person.
Cosmetically I look
so straight, I’ve
amazed everyone.
My surgeon made
all this happen, he
knew the top where
I was fused couldn’t
be undone so he
attached a MAGEC
rod to my shoulder to
jack me up. Further
down the line I might need a full fusion but
as of now it has changed my life.
Now I can plan a future. I’ll be forever
thankful to my surgeon for being the only
one willing to take me on and knowing in his
heart he could help me. My MAGECal rod
saved my life!
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British Scoliosis Research Foundation Annual Review 2014 - 2015
Current Research
Scoliosis Priority Setting
Partnership
In late 2015 we had our first steering group
meeting with the James Lind Alliance (part of
the National Institute for Health Research) to
work on a priority setting partnership (PSP).
The PSP brings clinicians, patients, carers
and researchers together to identify a top
10 list of research priorities to focus on in
the future.
The partnership will investigate, discuss and
outline research priorities into the diagnosis,
management, and prevention of progression
of scoliosis in the future. The aim of the
Research Results
partnership is to gather a wide range of
views. This is an exciting opportunity that the
BSRF is funding.
Many medical charities and organisations
have already taken part in Priority Setting
Partnerships for other areas of medicine
e.g. Asthma, Depression, Dementia,
Multiple Sclerosis.
In the future, as a result of this initiative, we
expect to be able to promote our research
priorities to a wider range of potential
researchers and to increase our levels of
research funding.
The problem
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Research in
Progress
Scoliosis that is present at birth,
or which develops very early in life,
is different from the better known idiopathic
The genetic basis of
scoliosis that appears during adolescence. The
congenital scoliosis
causes of congenital scoliosis are very diverse and
Dr PD Turnpenny, Royal
often unknown, though frequently some of the vertebrae
Devon & Exeter
do not form normally and the distorted shape contributes
Hospital.
to spinal curvature.
In many cases the problem may not be genetic, but
occasionally the problem clearly runs in the family
This project aims to use the
and is hereditary. Sometimes these early onset
most up-to-date molecular genetic
forms of scoliosis are progressive and
technology, called next generation
require major surgery in childhood.
sequencing, to look for genetic causes of
Potential
familial congenital scoliosis. The research
Outcomes
group have identified a number of suitable
The findings will benefit the
families and their DNA will be analysed
affected
families but also provide
in an attempt to identify variants, and
more
insights
into the formation and
hence new genes, that are crucial
development
of
the spine. This may
to normal spine formation. involve collaborating with a research
group in Australia who are skilled in
being able to study the cell biology of
the genes and their mutations
in animal models.
Research Aims
British Scoliosis Research Foundation Annual Review 2014 - 2015
The effect of wound irrigation with Povidone-Iodine
Mr MP Newton Ede, University of Birmingham/ Manchester.
Wound infection as a complication following scoliosis
surgery and other spinal surgeries is potentially
devastating and can lead to failure of the
surgery and serious septic illness. This
has led to many surgeons using a dilute
iodine lavage at the end of surgery
(PVI). PVI kills bacteria and is used
as skin preparation. We do know
that its use as a lavage in spinal
wounds does lead to a reduced
infection rate however, little is
known about its side-effects
when used in this way.
Critical to success of any
scoliosis surgery is the
establishment of solid bony
fusion. This means that the
spine, which is normally a
mobile structure, must fuse
solid along the length required.
To do this the bone producing
cells (osteoblasts) must be able
to function normally to produce
solid bony fusion. If this does not
occur then further surgery is often
required. Also it is desirable to not harm
the intervertebral disc through surgery and
cause premature degeneration, especially at
the end of the fused segment where the spine
is mobile. Thus the research team examined, using
animal tissue, the effect of dilute PVI on these bone
and disc cells and the ability of those cells to maintain their
normal function and survivability after exposure.
Results indicated that PVI has a rapid and detrimental effect on human osteoblast cellular
proliferation, metabolic function, and bone nodule mineralisation. From this work the team
hope to inform practice regarding safe concentrations and exposure times.
The results of this study have been accepted for publication in Spine.
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British Scoliosis Research Foundation Annual Review 2014 - 2015
British Scoliosis Research Foundation Annual Review 2014 - 2015
Structure
Finances
Patron: Jocelyn Cockburn
2014 Funds in £74,498
Chairman: Ian Nelson 2014- Present
Consultant Orthopaedic Surgeon, Bristol
Secretary and Treasurer: Peter Virley
Retired Businessman
Council:
Stephanie Clark Executive Editor at
the Lancet
TRUSTS,
FOUNDATIONS etc. 49%
INDIVIDUAL
FUNDRAISING 46%
INVESTMENTS 5%
Andrew Clarke Consultant Spinal Surgeon,
Royal Devon & Exeter Hospital
Michael Edgar Retired Orthopaedic
Surgeon, Stanmore and Emeritus Reader
in Surgery UCL
Jeremy Fairbank Consultant
Spinal Surgeon, Oxford
2014 Funds out £70,412
Peter Millner Consultant
Orthopaedic and Spinal
Surgeon Leeds
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Hilali Noordeen
Consultant Orthopaedic
Surgeon, Stanmore
SUPPORT & ADMIN 2%
STAFF & FACILITIES 58%
2014 Staff and Facilities
GRANT RESEARCH ADMINISTRATION 35%
PHILIP ZORAB SYMPOSIUM 22%
COMMUNICATION & ADMINISTRATION 20%
FUNDRAISING 23%
RESEARCH GRANTS 40%
Christopher
Weatherley
Consultant Spinal
Surgeon, Retired
James Zorab Son
of Dr Phillip Zorab,
founder of BSRF
Staff:
General Manager:
Claire Curley
Communications
Manager:
Christina Rolles
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British Scoliosis Research Foundation
c/o SAUK, Unit 4 Ivebury Court,
325 Latimer Road, London, W10 6RA
Tel: +44 (0)20 8960 7110
Web: www.bsrf.co.uk
Facebook: BritishScoliosisResearchFoundation
Twitter: @ScoliResearch
Registered Charity Number: 803772
Designed by DesignJuice.
We are incredibly grateful to Ayesha Jones for generously volunteering her
time and photography skills.
Our thanks also go to the models, who have scoliosis and gave their time to help
raise awareness of the condition and to our sister organisation SAUK for allowing us
use of the photographs.
Icons on p10 created by Aleks, Ed Harrison, PJ Souders, Gregor Crešnar, Rflor and Vectors Market from the Noun Project.