Scottish Children s Research Network Young Person s Group

Transcription

1 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

2 Scottish Children s Research Network Young Person s Group OVERVIEW 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

3 Who are we? 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

4 What do we do? 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

5 ? How did we find out about YPG? 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

6 What do the youth members? get from being in ScotCRN-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

7 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

8 Ican Summit 2016

9 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.

10 Some examples of projects we have been involved in RAACENO SHARE SEATON

11 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

12 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

13 SHARE What is SHARE? 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

14 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 year olds Developed the process of registering for young people Designed the consent and assent and the design of the leaflets.

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17 Pregnancy Birth Five years Ten years Fifteen years 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

18 Questionnaire structure- language How we helped Looked at the letters of invitation, information sheets, consent forms. Incentives money/tokens Approach methods post, s, 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

19 Questionnaire structure- language How we helped Incentives 10 Approach methods post Taking of bloods venepuncture Appointment times and location- evenings Made the video

20 Questionnaire structure- language How we helped Incentives 10 Approach methods post Taking of bloods venepuncture Appointment times and location- evenings Made the video 49% response rate to questionnaire year olds attended clinic for a full clinical assessment

21 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

22 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.

23 ScotCRN-YPG WHERE DO WE GO FROM HERE?

24 ScotCRN-YPG Pamela Dicks International Summit 2018