news from the west midlands medicines for children...
TRANSCRIPT
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NEWS FROM THE WEST MIDLANDS
MEDICINES FOR CHILDREN RESEARCH NETWORK
WINTER 2010
A Note From the West Midlands MCRN Director
“I trust that everyone has enjoyed the cold spell of
weather. As I write this brief introduction it is now
raining hard and its grey and damp. I prefer the cold,
crisp, icy weather but unfortunately we have no say in
this. Similarly, we have no say in future government de-
cisions about funding within the NHS. Lets hope how-
ever, that research programmes are indeed ring fenced
and we can go from strength to strength. We have had
some changes in personnel and in the near future we
hope to be interviewing for Band 7 Research Nurses
within the West Midlands. Sam and I had our bi-annual meeting with Ros and Vanessa in November at the Na-
tional Exhibition Centre in Birmingham. I don’t know if any of you have been
there when there is nothing happening but it is very eerie, cold and reminiscent
of a film set which has been abandoned. The outcome of the meeting was very
successful and in general, Liverpool is pleased with the way we are progressing.
I think we now all recognise the obstacles to paediatric research and I am ab-
solutely certain that without the network, research in children in the UK would
have virtually stopped. I think all of you should have a pat on the back and I
want to say congratulations for all your hard work. Please remember we work
together as a team and if you have ideas about how we could improve our per-
formance I would be really pleased if you contacted me. The numbers of pa-
tients we have entered into studies in 2009 have increased significantly from
the numbers in 2008. Let’s continue to increase those numbers in 2010.”
Best wishes to you all
Warren
In this
edition……
An update on the
West Midlands Young Per-
sons Group.
Band 7 Senior Clnical Re-
search Nurse Vacancies at
Birmimgham Children’s and
North Staffs Hospitals.
Details further on how to
apply.
A summary of the success-
ful CASCADE Trial
An informative table of
trial activity.
Staff News.
WM-MCRN—The Team
Trial News • PUDDLS (Paediatric UK Demyelinating Disease Longitudinal) is the first study adopted by West Midlands
MCRN studying Multiple Sclerosis. The target is 12 per year at BCH and we have recruited 2 patients in the
first two weeks of the study opening!
• The University Hospital of North Staffordshire is at the moment the 2nd highest recruiter to the MASCOT
(Management of Asthma in School Age Children on Therapy) study with 12 patients, 6 of those are ran-
domised.
• The CHiP (Control of Hyperglycaemia in Paediatric Intensive Care) trial has recruited its 100th patient at
Birmingham Children’s Hospital. Well done to all those involved!!
• MOR – 002 (Biomarin) - Phase 1/2 Safety and efficacy investigation of a new enzyme replacement therapy
in children’s with Morquio Syndrome. Eight patients have been recruited to this study so far, exceeding the
recruitment target by three.
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On the 28th October 2009 the children and young people of the West Midlands MCRN Young persons Group were
visited by the Communications Officer and PPI lead from the Medicines and Healthcare Products Regulatory
Agency (MHRA). Children and young people had the opportunity to learn about how medicines in the UK are regu-
lated before they are fit to be given to patients.
After learning about this process members of this group were then asked to give their opinions with regards to
early access to medicines in different circumstances, at the end of a phase 2 trial, instead of waiting until the
end of the trial.
All the young people in the advisory group gave their opinions and came up with some fantastic and thought pro-
voking questions and thoughts. The MHRA were extremely impressed and interested in the responses of the chil-
dren and young people. Following this session and two others hosted by the Liverpool and Trent MCRN young per-
sons group the MHRA will compile a report which will include all of these questions and opinions. This report will
be sent to the Secretary of State for Health, The Right Honorary Andy Burnham MP.
This is a very important piece of work that the children and young people have taken part in and we hope to hear
some feedback from the MHRA in due course.
Since this date the children have had a follow up meeting and have been learning about all aspects of the re-
search cycle from the research question to dissemination of research findings. They have helped a research fel-
low at Aston University looking at formulations and will soon be commenting on another proposed study with a
PICU research fellow.
If you are a researcher or have any aspects of research that you think the group could help you with then please
contact us. We have meetings in January, March and May and every two months thereafter. If you have any fur-
ther questions or want to know more about the group please do not hesitate to contact us:-
[email protected] 0121 333 8739 or [email protected] 01782 662579
Medicines and Healthcare Products Regulatory Agency (MHRA) Visit – West Midlands
MCRN Young Persons Group
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Job Title: Senior Clinical Research Nurse
Salary: Band 7
Location: 1 position vacant at Birmingham Children’s Hospital NHS Trust
1 position vacant at University Hospital of North Staffordshire NHS Trust
Hours: 1.0 WTE (37.5 hours/week) – part-time will be considered for the Birmingham position
0.6 WTE (22.5 hours/week) for the North Staffordshire position
Contract: Permanent
Closing Date: 29th January 2010
Interview Date: 17th February 2010 for Birmingham position
18th February 2010 for North Staffordshire position
If you are a registered paediatric nurse (RSCN or RN (Child)) or a registered nurse (RN) with paediat-
ric experience and you are looking for a new challenge, then this is an exciting opportunity to develop
and expand your skills and knowledge in research and team management.
An exciting opportunity has arisen for an enthusiastic, innovative and motivated nurse to play a key role
in the West Midlands Medicines for Children Research Network. The WM-MCRN is one of 6 local net-
works that have been established to facilitate a broad range of research projects looking at children’s
medicines. We are seeking to appoint a Senior Clinical Research Facilitator (CRF) to manage a team of
research facilitators who are based in either Birmingham or Stoke and cover a number of NHS sites
across the North and Central West Midlands.
You should be an adept communicator with the ability to engage and motivate others and a flair for posi-
tively influencing people. A good working knowledge of research processes, regulatory requirements and
research governance is essential, along with previous experience of managing a team. Experience of fi-
nancial resources would be beneficial. You will be expected to manage your own workload and support
the team to carry out their caseloads of clinical trials and other research studies.
Please apply to either job via jobs.nhs.uk, quoting job reference 284-PK540-09 for Birmingham
Children’s Hospital and quote job reference 284-PK-541-09 for North Staffordshire.
To discuss either of the two jobs informally, please call Sam Hayton (Network Manager) 0121
333 8749 or 07919110257 or Prof. Warren Lenney (Network Director) on 01782 662579
WEST MIDLANDS JOB VACANCY
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2009 saw the successful completion of the CASCADE study at UHNS. The recruitment target of
26 was reached. This trial is also running at Heartlands, Worcester and Burton and they are well on
the way to achieving their targets.
What is the purpose of the study?
Managing diabetes within a full and active life is challenging for children, young people and families.
Learning to adapt to this condition and sharing increasing responsibility with their parents can be
difficult to balance alongside additional peer pressure from friends who have more flexible life-
styles.
This study is to look at an alternative approach to supporting patients and parents during their clinic
visits, by bringing children and young people of similar ages together, with their parents, to motivate
them to adapt their insulin dosage, eat normally and manage other day-to-day challenges such as
exercise and illness.
It is important to know whether this alternative approach is helpful for all young people with
diabetes, and whether its results are sufficiently good for the NHS to recommend it. Can it be
delivered in busy clinics across the country and is it acceptable to patients and their families?
Twenty-six diabetes clinics across England and 520 children and young people, aged 8-16, and their
families, will be able to take part in the trial. The trial will be able to draw confident conclusions
about the effects on control of diabetes (measured by HbA1c) and other outcomes including patient
management of diabetes and use of health services, their health related quality of life, and psycho-
social well-being. Patients, families and clinic staff will also be asked their views about patient
education, and economists will assess the costs.
Congratulations
Well done to Dr Raffeeq, the PI at UHNS and to Marie Phipps, our MCRN Research Facilitator.
Vicki Strange the Senior Research Officer has commented “The support from Marie Phipps at
North Staffordshire Hospital has been invaluable. This site was one of our first to reach their re-
cruitment target . This is a direct result of her commitment and skills when working with patients,
the diabetes team at the hospital and with the central CASCADE research team in London.”
A great example of how MCRN can assist in speeding up clinical trials to completion thereby
benefiting children quicker in the long term
Thanks also to the Outpatients Team for their help and assistance.
CASCADE
Child and Adolescent Structured Competencies Approach to
Diabetes Education
StaR Child Health Conference
Last October Sam, accompanied by three of the team, attended the first Star Child Health Confer-
ence in Amsterdam. Star Child Health is part of the International Forum of Standards for Research
with Children, who is trying to develop standards/guidance for conducting paediatric trials.
StaR Child Health is a group of methodologists, clinicians and policy makers who seek to enhance the
quality, ethics and reliability of paediatric clinical research by promoting the use of evidence-based
standards or guidance for clinical studies with children. Sam was subsequently invited to join the
"Recruitment and informed consent" development group, assisting in the development, dissemination
and implementation of evidence-based standards for recruitment of children into
clinical research studies.
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West Midlands MCRN Trial Activity (Open and in Set-up)
Acronym Area of Interest Status LRN Sites
AdDIT Diabetes and Endo-crinology
Open BCH
BOOST Neonatal Open UHCW, Birmingham Women’s, Russells Hall
New Cross, Shrewsbury Royal Hospital
CASCADE Diabetes and Endo-crinology
Open Heartlands, Burton, UHNS
CASG 112 Immunology In Setup Heartlands
CHARMS II Rheumatology Open BCH
CHIP (PICU) Anaesthesia Pain and PICU
Open BCH
UHNS
DETEMIR VS GLARGINE
Diabetes and Endo-crinology
Open BCH
DIONE (Tibotec HIV) Immunology Open Heartlands, UHNS
DUCHENNE (Heart Pro-tection)
Neurology In Setup RJAH Oswestry
Heartlands
Easai Epilepsy (Perampanel)
Neurology Open UHNS,
Elaprase Hunter Metabolic Diseases Open BCH
EUROWILSON Hepatology Open BCH
GAS Anaesthesia Pain and PICU
In Setup BCH
Glutamine in CF Respiratory Open Heartlands
H IVAT Respiratory Open BCH,UHCW, New Cross, UHNS
ICISS Neurology Open BCH, UHNS, Burton, Walsall, Russells Hall,
City and Sandwell, Warwick, Alexandra (Redditch), Hereford, Shrewsbury and Telford
Worcester, Staffordshire General
ICS/LABA Respiratory Open UHNS
I2S2 Neonatal In Setup Birmingham Women’s
JUMP Diabetes and Endo-crinology
Open BCH, Heartlands, Walsall Manor, Hereford, UHCW, UHNS
KICk OFF Diabetes and Endo-crinology
Open BCH
Hereford
Lysosomal Storage Dis-order
Metabolic Disorders Open BCH
MAGNETIC Respiratory Open BCH, Heartlands, UHNS
MASCOT Respiratory Open UHNS, UHCW
MENDS Neurology Open BCH
MIND Neonatal In Setup Birmingham Women’s
MOCA Diabetes and Endo-crinology
Open BCH
UHCW
MOR – 001 Metabolic Disorders Open BCH
MOR – 002 Metabolic Disorders Open BCH
Mundipharma Anaesthesia, Pain and PICU
Open BCH
MYCYC Vascular Open BCH
NFS Diabetes and Endo-crinology
Open BCH
Heartlands
PALF Hepatology Open BCH
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P3MC Neurology In Setup BCH
PIANO (Tibotec HIV) Immunology Open Heartlands
POP Rheumatology Open BCH
RaDaR Renal In Setup BCH
Recruit General Paediatrics Open UHNS
Roche Tamiflu General Paediatrics In Setup BCH, Walsall Manor, Heartlands, Sandwell,
City, Shrewsbury Royal, Princess Royal Tel-ford, Burton, UHNS, Worcester
SCO BIA Neurology Open BCH
SLEEPS Anaesthesia, Pain and PICU
In Setup BCH
TAPS Haematology Open BCH
Tiotropium Respiratory Open New Cross
Heartlands
UK JSLE Cohort Rheumatology Open BCH
PUDDLS Neurology Open BCH
West Midlands MCRN Trial Activity (Open and in Set-up)
Staff News
New Starters
Katharine Beamond joined us at the end of August last year. She graduated from Keele University
in 2007 having attained a BN (Hons) with First Class Honors in Children’s Nursing. Since qualifying,
Katharine has worked within Trauma, Orthopaedics and Acute Paediatric Care. Katharine first
became interested in research whilst in the University setting and is delighted to be working for
MCRN based at the University Hospital of North Staffordshire.
Rachel Jackson joined the team in November 2009, having previously worked as a Research Nurse in
the Wellcome Trust Clinical Research Facility at Birmingham Children’s Hospital. She graduated 10
years ago with a BA (Hons) in Paediatric Nursing and has spent 8 years working in neonates surgical
care in Birmingham Children's and the special baby care unit at Good Hope Hospital. Rachel will
specialise in supporting neonatal studies at units across the Central West Midlands.
Leavers
We are sorry to lose Mark Smith, one of our CRF’s in Birmingham Children’s Hospital. He is leaving
at the end of January to take up a lecturer post at Birmingham City University, teaching pre-reg
staff nurses, nursing practice and will also work in PICU in Birmingham Children’s Hospital.
Promotions
Congratulations to Jacqui Daglish who was promoted to Band 7 Senior Clinical Research Facilitator
in August. She is based at University Hospital of Coventry where she looks after the South of the
West Midlands in her Band 7 role and also co-ordinates the training database for all nurses in the
West Midlands region.
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WM-MCRN—THE TEAM
Professor Warren Lenney Dr Kevin Morris Dr Heather Stirling
Network Director/Clinical Lead North Clinical Lead Central Clinical Lead South
Dr Sam Hayton Mandy Aspinall Jacqui Daglish
Network Manager Senior CRF Central Senior CRF South
Claire Callens Carly Tibbins Gemma Slinn
User Involvement Co-ordinator User Involvement Clinical Trials
Co-ordinator Co-ordinator
Hilary Shepley Marie Phipps Katharine Beamond
CRF North CRF North CRF North
Sarah Reynolds Kristina Lum Kin Gerri Mulcahy
CRF Central/South CRF Central PA/Administrator
North
Tracey Kirkwood Emily Benson Charlene Gallagher
Joint MCRN/Wellcome CRF CRF Central PA/Administrator
Central Central
Fiona Thompson Karen Miles Cathy Foreman
CRF South MCRN MASCOT Nurse Network Support Officer
Individual email addresses can be found on the website as below.
Website You can view this at www.meds4kids.nhs.uk.
North —01782 662579 Central—0121 333 8739 South—024 7696 7003
If you have any queries regarding this newsletter or have a contribution for future
editions please contact [email protected].