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Scottish Children’s Research Network –
Young Person’s Group
Scott Macgregor, Rebecca Brimble, Andrei
Rotariu, Noah Methven
Members of ScotCRN YPG
Attended ICAN in Barcelona representing
ScotCRN
• Introduction to ScotCRN –YPG
• Who are we
• What do we do
• How do we improve clinical trials
• Some examples of projects we have been involved in
• RAACENO
• SHARE
• SEATON
Scottish Children’s Research Network – Young Person’s Group
OVERVIEW
5 female and 10 male members, who
live in the NE Scotland.
We are between 11 and 18 years old
and we have a common interest in
children’s medicine, health research
and the development of new drugs.
Our group supports the work of the
Scottish Children’s Research Network
–network that facilitates the set up
and conduct of clinical trial in children
in the National Health Service and
funded by the Chief Scientist Office.
We meet approximately every two
months, on a Sunday for five hours
Who are we?
• Receive training in drug discovery, development
of new medicines clinical trials and ethics
• Comment on the language, design and
age appropriateness of patient
documentation, apps and diaries
• Comment on design of clinical trials and patient visits
• Advise on how to approach young people, social media and
publicity events
What do we do?
?
• Participant in a clinical trial and wanted to know more
• Regular visitor to the hospital as a patient, I saw information
about the group and wanted to be involved in improving
medicines for children
• Interested in a career in research, medicine or health care
• Friend or sibling is a member and it sounded interesting
• I received information from my school
How did we find out about YPG?
?
• Interesting to learn about how
new medicines are discovered
and tested-
• Rewarding to know that
investigators listen to our
suggestions and believe we
can improve their studies.
• Friends - GEN R and iCAN
• Improvements- means their
assent to participate in a trial is
as fully informed as possible
• Understanding – empathy
• Future career
What do the youth members get from being in
ScotCRN-YPG?
Taking it to a different level- working with iCAN
• Work with other groups internationally through ICAN to ensure that
children and young people are included in decisions and their opinions
considered by pharma and policy makers.
• Provide a point of contact for pharma companies and investigators where
they can obtain the views and opinions of international groups of ‘research
ready’ youths
Ican Summit 2016
RAACENO
Using exhaled nitric oxide to prevent asthma
attacks in children
• Hypothesis. That the proportion of children with an
asthma exacerbation will be reduced when asthma
treatment guided by Nitric Oxide measurement plus
symptoms is compared to treatment guided only by
symptoms.
• Aims. To evaluate the efficacy of asthma treatment
guided by Nitric Oxide measurement plus symptoms
management on exacerbation in 502 children with
asthma. To understand the mechanistic relationship
between sputum eosinophilia, Nitric Oxide and
exacerbation.
• Some examples of projects
we have been involved in
• RAACENO
• SHARE
• SEATON
RAACENO
Using exhaled nitric oxide to prevent asthma
attacks in children
• Children are invited to this trial by letter from their
General Practitioner
• Information sheets needs to be right
• Our feedback: the investigator had simplified the
information but it didn’t explain the purpose of the trial
• It wasn’t clear if the ‘breathe’ test reduced asthma
attacks. We needed the protocol to understand that the
Nitric Oxide was being used as a method of deciding on
a treatment path
RAACENO
Using exhaled nitric oxide to prevent asthma
attacks in children
Suggestions:
• Explain why the study is being done: what so they hope
to achieve-
• Have a website- doctor explaining the study
• Graphics to explain the biology e.g eosinophils, Nitric
Oxide
• Video of clinical assessments – how painful
• Language – was good but could be laid out better in
defined sections
SHARE is a new NHS Research Scotland initiative created to
establish a register of people interested in participating in health
research
and who agree to allow SHARE to use the coded data in their
various NHS computer records to check whether they might be
suitable for health research studies.
Registering for SHARE means you consent to be approached
about relevant clinical trials
SHARE open to adults 16 years plus
SHARE – What is SHARE?
Discussed the ethics of including young people in
SHARE
Helped prepare the ethics application to reduce age for
SHARE to include 11-15 year olds
Developed the process of registering for young people
Designed the consent and assent and the design of the
leaflets.
SHARE – What is SHARE?
SEATON -Study of Eczema and Asthma to
observe The influence Of Nutrition
• Cohort in Aberdeen
• Recruited during pregnancy
• Followed up at 0, 5 10 and 15
• Invite young adults at 15
Pre
gnancy
Birth
Fiv
e y
ears
Ten y
ears
Fifte
en
years
How we helped• Questionnaire structure- language
• Looked at the letters of invitation, information sheets,
consent forms.
• Incentives – money/tokens
• Approach methods – post, emails, social media
• Taking of bloods – venepuncture/finger prick
• Appointment times and location
• Suggested a video of what would happen during the
clinical visit, including venepuncture, spirometry and skin
prick test
How we helped• Questionnaire structure- language
• Incentives – £10
• Approach methods – post
• Taking of bloods – venepuncture
• Appointment times and location- evenings
• Made the video
How we helped• Questionnaire structure- language
• Incentives – £10
• Approach methods – post
• Taking of bloods – venepuncture
• Appointment times and location- evenings
• Made the video
49% response rate to questionnaire
515 15 year olds attended clinic for a full clinical
assessment
ScotCRN-YPG
Everyone agrees that young people and
children should have a voice in clinical
research- we want to make that an informed
voice that represents young people globally
that makes a difference and is heard by the
decision makers
What does Scot-CRN gain?
Information sheets that are
concise, accurate, age
appropriate, well presented
result in parent(s) and patients
that are well informed on arrival
at the consent visit, they have
relevant questions and
understand their involvement,
the risks and benefits.
Retention is better when
everyone has a clear
understanding of the
commitment involved from
the beginning.
ScotCRN-YPG
WHERE DO WE GO FROM HERE?
