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NEW STUDY REPORT – The outcomes of switching from original Infliximab (Remicade) to the Biosimilar (Remsima)

We have recently published work (supported by the Foundation) in June of this year highlighting the results from one of our studies, undertaken by Lisa Gervais, IBD Clinical Nurse Specialist / Senior Research Nurse.

Infliximab is a medicine which is increasingly being used as a treatment option for paediatric inflammatory bowel disease (PIBD). We have previously used Remicade but in 2015 a different form of this medicine (known as a biosimilar) called Remsima, was introduced and is now widely used in clinical practice. There was extensive research in adults looking at patients who has switched from one type (Remicade) to the other (Remsima), but limited data in children and young people. We therefore collected data from all 3 regional Scottish Centres to share our experience of this.

Between Sept 2016 and Jan 2018, there were 39 patients that were prescribed Remicade, of which 33 switched to Remsima. We collected results from tests such as poo and blood samples, medicine levels and review of symptoms. These patients were followed up for a period of 12 months.

Our results are promising and support the data that has already been published. Our findings show that switching from the original Infliximab, (Remicade) to the biosimilar; (Remsima) appears not to be associated with any increase in negative side effects and works just as well. This work is important as it was carried out for all children with IBD receiving these treatments at a similar time allowing a greater number of children to be studied. The work also resulted in a significant cost saving to the NHS of £1500 per patient per year or more than £60,000 for all the patients involved in the study.

The full journal article:

Gervais,L, McLean,L.L,  Wilson,M.L, Cameron, C, Curtis,L, Garrick,V,  Armstrong, K, Tayler, R,  Henderson, P, Hansen, R, Chalmers, I, Wilson D.C and Russell, R.K (2018) Switching from Originator to Biosimilar Infliximab in Paediatric Inflammatory Bowel Disease is Feasible and Uneventful. Journal of Pediatric Gastroenterology and Nutrition. doi: 10.1097/MPG.0000000000002091

This project was in addition to the many different research studies and audits that are running in our department for children with IBD many of which are supported by the Foundation.

I would like to thank the Catherine McEwan Foundation for their continued support. If anyone has any questions or would like more information, then please contact Lisa or any member of the IBD team.

Lisa Gervais – IBD Clinical Nurse Specialist / Senior Research Nurse

New study highlights usefulness of long term feeding tubes in patients with Crohn’s Disease

We have recently published work (supported by the foundation) in June of this year highlighting the outcomes from one of our studies undertaken by Hazel Duncan clinical and research dietician.

Children and young people with Crohn’s disease can have problems gaining enough weight and a small number can require a long term feeding tube to be placed to help them gain weight.  In the short term we use nasogastric tubes but longer term these children should have a gastrostomy inserted.  There is not much research assessing the implications on growth in these patients and therefore we decided to review the progress our patients had made using gastrostomies and publish the results.

Between 2003 and 2010 we had 16 patients with Crohn’s disease who had had a gastrostomy placed, 9 of the 16 reported temporary complications which resolved in a month and only one patient reported long term complications.  We looked at growth improvement from time of insertion until 2 years following insertion and found that there was a marked improvement in their weight and body mass index (BMI)scoring 1 year later. An improvement in height after  2 years  was also found.  We also looked at the type of feed used and the volume each patient had.

From the results of our study we know that for patients with Crohn’s disease gastrosotmy tubes are very useful to promote weight gain and improve growth outcomes.  This is important for patients who may be struggling to achieve adequate nutrition through their diet alone.  We also can now provide reassurance to families and patients that insertion of gastrostomies in patients with crohn’s disease is both safe and effective.

The full journal article Duncan H, Painesi A, Buchanan E, McGrogan P, Gerasimidis K, Walker G, Haddock G, Russell RK. Percutaneous endoscopic gastrostomy placement in paediatric Crohn’s disease patients contributes to both improved nutrition and growth. Acta Paediatrica 2018;107(6):1094-1099.  Thanks again for the support and if anyone has any further questions or queries then please contact hazel or any  member of the IBD team.

We are proud to announce our new Clinical Research Fellow

Hello everyone! My name is Rachel Harris and I am the new Clinical Research Fellow in Paediatric Gastroenterology working between the Clinical Research Facility and the Royal Hospital for Children, Glasgow and am the 3rd Catherine McEwan fellow.

I am a junior doctor and after completing a placement within the paediatric gastroenterology department here at RHC in 2016 I loved my team so much I just had to come back! I currently split my time 50/50 between being a ward doctor looking after the gastroenterology inpatients and conducting various research activities from the Clinical Research Facility. We are so lucky to work within such a fantastic team of doctors, nurses, specialist nurses, dieticians, AHPs and ward staff – not to mention of course our amazing patients! I am really enjoying my new post and am incredibly grateful to the Catherine McEwan Foundation for the opportunity my role is giving me to develop my skills and interests in both research and paediatrics.

What We’ve Been Working on So Far

There are currently lots of exciting research projects going on within the IBD team here at the Royal Hospital for Children which we hope will make a positive impact on our patients present and future. Recently I have been working alongside Lisa the research nurses on a new European wide Inception Cohort and safety registry; this will collect information on a 1000 new IBD patients at diagnosis in Europe and follow how they do after diagnosis. This will assess the effectiveness of current treatment plans in patients with IBD and how this relates to their symptoms and outcome. Thanks to the support we have been able to recruit many of the recently diagnosed patients into this study making sure patients from RHC will be well represented in this large and important study. Our team are also hoping to commence a randomised control trial looking at the drugs we use for maintenance of remission in patients with newly diagnosed Crohn’s disease very soon.

Now I have found my feet I am also working on several other studies including a study analysing the factors which may predict and affect treatment outcomes for patients with severe IBD (infliximab levels in IBD patients), complications from treatment with IV iron treatment and how to prevent these in future, plus outcomes and complications for pouch surgery for Ulcerative Colitis. I am also assisting in studies looking at the impact of exercise in IBD and bone health in IBD patients assessed by MRI.

The research undertaken within the paediatric gastroenterology team at RHC will undoubtedly be invaluable in helping clinical teams understand IBD better and develop new treatment strategies for the future; and this work would not be possible without the Catherine McEwan foundation – so thank you once again for all of your support!

Dr Rachel Harris (3rd Catherine McEwan Fellow) July 2018

Cara Muirhead Blog

Hi, I’m Calum’s sister Cara.  I am 16 years old and was diagnosed with Crohns disease in 2016.

It was June and I was on holiday when I first started having symptoms.  These consisted of ulcers in my mouth and going to the toilet more than usual, wasn’t the best holiday I’ve ever had.  After heading home, the symptoms started getting worse and I had severe stomach pains.

After being treated much the same way initially as my brother and being told there was nothing wrong with me my parents were not convinced and managed to get me to see a specialist where I was tested and was diagnosed with Crohns disease.

I was put on modulen for 8 weeks which had amazing results and I finally felt normal, there were no more pains and the toilet and I drifted apart fortunately. But after the end of the 8 weeks of not eating anything and drinking disgusting shakes the flare ups started again and I was reunited with the toilet.  I was put on steroids for almost 3 months which helped but they made me gain weight amongst other horrible side effects. I am now on azathioprine daily and infliximab infusions every 8 weeks which has had great results and I am now symptom free.

My IBD journey has been scary and at times I asked myself “Am I ever going to be normal again?” The answer is yes with everything I’ve been through I can face anything now with the support of my family and friends.  I went on to sit my Nat 5’s the following year and passed them all. I’m still a normal teenage girl and whenever I can I help raise money to help find a cure for this awful disease.

We both feel quite lucky that our condition is responding well to the medication however neither of us know what the future holds, but isn’t that the same for everyone?

Calum Muirhead Blog

My name is Calum Muirhead, I am 21 years old. I was first diagnosed with ulcerative colitis when I was 13 years old.

I was a typical happy go lucky healthy teenager who was competing and doing well in the Airdrie Harriers.  I had started doing extra training as I wanted to do well in the national cross-country championships, all my times began to improve as I became stronger and fitter. I never thought that I would become an Olympic medallist however I enjoyed athletics and the outdoor lifestyle and hoped that it would stay a part of my life. However, fate was to play its hand and my health started to deteriorate.

After numerous trips to the G.P. being told that it was maybe irritable bowel syndrome (the medication they gave me for that made it worse). I was also told that it was maybe just in my head, and was I being bullied, therefore causing anxiety.  The end result was I was losing weight at a rapid rate and constantly running to the toilet, losing so much blood that I was so weak I couldn’t move off the couch.

My dad had to carry me out to the car after getting an appointment at NHS 24, they instantly knew I needed to go to the sick children’s hospital in Glasgow as I was in a very bad way.  After seeing a Gastro consultant who did some scopes I was diagnosed with ulcerative colitis. It was a shock to find out that I had a lifelong condition, I had mixed emotions, all sorts of things were going through my head, what would this mean?  Would I have to give up on my outdoor lifestyle and sports activities, amongst other things.

My ulcerative colitis journey so far has seen me have periods of remission with flare ups, some I’ve been able to manage and some have put me in hospital.  The last couple of flare ups were particularly aggressive ones and I also contracted C diff, this was possibly due to the antibiotics I was taking to get rid of the cysts I had through taking steroids.  Since the last flare up I have been put on adalimumab injections or more commonly known as Humira which I administer myself every 2 weeks, along with this every day I take azathioprine and pentasa. This seems to be working for me at the moment and I am in complete remission.

I no longer do athletics initially due to the pains in my joints.  I took up cycling as this was non-impact. I no longer have joint pain; however, I am sticking with cycling and I have joined the local cycling club who I have represented at mountain bike events even finishing on the podium at Ten-Under-The-Ben in Fort William.

Doing all of this through all the flare ups and remissions can be difficult, just when I am at my strongest and fittest I have a flare up and I am back to square one again.

This is the reason why I am doing my biggest challenge in cycling so far – The North Coast 500 in 4 days for the Catherine McEwan Foundation.

Catherine McEwan Foundation Work has Global Reach

We are excited to let you know that a project supported by the Catherine McEwan Foundation in conjunction with the team at SOLUS UK was launched at the World Paediatric Inflammatory Bowel Disease meeting in Barcelona last week.
 
The Foundation has put together an app to help doctors and other health professionals to assist in amalgamating multiple pieces of information when making a diagnosis of IBD. The app helps by taking all of the information points together and then suggesting a precise IBD diagnosis of Crohn’s disease, Ulcerative Colitis or IBD unclassified. The app is called PIBD classes and is free to download for teams all over the world.
 
The application was presented to more than 500 delegates from more than 20 countries last week by Professor Richard Russell on behalf of the Foundation. Many delegates downloaded the app during the presentation and feedback during and after the world meeting has been very positive.
 
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The app was developed on the background of work published by the Porto group of ESPGHAN. We hope that this together with our previous app will continue to help teams looking after children with IBD within and far beyond the west of Scotland.

 

Well done Dr Konstantinos Gerasimidis!

We are delighted to announce that in recognition of his excellence in research and teaching of health professionals in nutrition and dietary therapy, Dr Konstantinos Gerasimidis (Kostas) has recently been promoted to Senior Lecturer in Clinical Nutrition by the University of Glasgow.

Kostas has gained funding from charities, the National Institute of Health Research, the Medical Research Council and industrial partners. He has published 45 papers, most of them exploring nutritional and dietary aspects in people with inflammatory bowel disease.

With collaborators from the University of Glasgow and NHS he has generated a cumulative income of £3.5 million to conduct research in the area of inflammatory bowel disease. Kostas is currently running a team of 9 PhD students, 4 post-doctoral researchers and two research assistants.

He is a great supporter of the Catherine McEwan Foundation and has been involved in many studies supported by money we have raised!

Well done Kostas…We are very proud of you and proud to work with you!

Here is a great picture of Kostas, looking all James Bond!

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Congrats to Russell!

We are delighted to announce that in recognition of his achievements within the field of paediatric gastroenterology especially inflammatory bowel disease Richard Russell has recently been promoted to the position of Honorary Professor by the University of Glasgow.

Richard has published more than 100 papers with most of them relating to inflammatory bowel disease. With international collaborators he was recently awarded a grant of more than 6 million Euros from the European Union to investigate new treatments for children with IBD.

He is currently the chair of the paediatric European Crohn’s and Colitis Organisation and is the lead of the children’s IBD team in the West of Scotland.
Richard and has team have worked with the Catherine McEwan Foundation closely for the past 9 years and our work together has proven to be very successful. To say we are proud of what he has achieved is an understatement.

Well done Professor Russell!
#IBDfighters

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Guest blogger Mhairi McGowan Research Fellow

An interesting look at the research work of Mhairi McGowan who was awarded the Catherine McEwan Foundation Fellowship

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Hello!

I am honoured to have been conducting researching regarding the causation of IBD on behalf of the Catherine McEwan Foundation for the past year or so. The Foundation have enabled such a great opportunity for myself and the others within the Human Nutrition department at the University of Glasgow and the department of paediatric gastroenterology at children’s hospital, who have been extremely dedicated in studying both Crohn’s Disease and Ulcerative Colitis for a number of years. We are thoroughly grateful to be part of such an inspiring charity. I am therefore excited to be able to explain a little bit about the research we do and to ensure you that, because of the hard work and financial input of the Foundation, significant work is ongoing trying to understand these diseases in the hope of developing a treatment or cure.

The majority of research within our IBD research group here in the Glasgow Royal Infirmary and the new Children’s hospital is in studying the human gut microbiota, or put simply; the bugs that live within our tummy.  At first, we may think that having bacteria living inside of us is a bit scary but actually, these tiny little “germs” are extremely important to human health and every single one of us are hosts to of trillions of these bugs. They thrive within our gut, especially within the large bowel, because it provides them with warm, oxygen free surroundings and a plentiful food supply from the diet. In return, these bacteria produce lots of useful substances that help us to stay healthy. These substances, specifically called fatty acids, are used by the cells within our bowel to fight off germs and to keep us healthy. Furthermore, they control irritation (inflammation) within the gut.

However, there is a strong notion that patients with IBD do not have a good relationship with the bacteria within their tummy, causing the irritation (inflammation), Until now, it has been hard to study this area as it is extremely hard to identify the bacteria involved and to understand why they might cause such a reaction. However, recent scientific advancements have allowed researchers to make some forward movement in identifying differences between the bacteria of IBD patients and those who don’t have such diseases. Some studies have found that IBD patients have more harmful species of bacteria within their gut which may cause disease, whilst others report that both Crohn’s and Colitis patients have reduced bacterial variety compared to healthy people. Therefore it may be that patients with IBD do not have enough different good (beneficial) bacteria working to keep our guts healthy.

Part of my research was investigating the differences between the bacteria of IBD patients and healthy people. However, a larger and perhaps more important aspect was looking at ways of changing the bugs so they looked like that of a healthy person. The bacteria within our guts use fibre from our diets as food, and different types of bacteria prefer different sources of fibre. So, depending on what type of food we eat, we can selectively grow different types of bacteria. However we do not know if this is possible in Crohn’s and Colitis patients. We decided to use a special experiment to investigate what happened when we provided the gut bacteria of IBD patients’ with different types of fibre.

We investigated this in the lab rather than within patients themselves.  The system we used in the lab did however mimic the surroundings inside the body so we could get an idea of what would happen in our tummies. This is like an “out of body” bowel.

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We looked at if the bacteria make helpful substances in response to the different fibres in Crohn’s Disease patients, and Colitis patients compared to healthy people.   It was found that there was a general trend of reduced helpful substances in those who had IBD. This may help us understand the causes or better ways to treat IBD. It also showed us that those who have already received treatment for their IBD are able to change the healthy substances their bowel’s make but not as much as patients without IBD.

As patients (or relatives of patients) of IBD, I suspect you all have been told by doctors that you may need to change your diet to help IBD. Some of you will have been on Modulen, (a liquid-based diet given to children with Crohn’s Disease). I am sure that most of you who have been on this diet will report that, although you may have missed eating some of your favourite foods, you felt a whole lot better after this treatment. So we already know that diet can influence disease; however this is a complex matter. Fibre is generally thought to be healthy, and as discussed, helps to make helpful compounds in our bowels.

We have now devised a specific diet which, in theory, should have the same effect as Modulen. Alongside his PhD student, Vaios Svolos, and consultant gastroenterologists Dr Richard Hansen, Dr Richard Russell and Dr Dan Gaya. we will be comparing the effects of this diet compared to Modulen in healthy people and in animals. If the results are promising, the team may be able to successfully implement this diet in patients, which would be very exciting indeed.

Throughout my research, I have been continually inspired by the people working around me; the academic researchers, clinicians, IBD nurses and dietitians… It is clear that there is a strong team in Glasgow both on the front line looking after patients, and behind the scenes conducting the all-important IBD research. I feel assured for the patients that I have met that they are in the most capable hands, and I am proud that I have had a small part in this diligent, passionate and exciting group.

The Catherine McEwan Foundation has obviously been invaluable in streamlining the efforts of this group, from funding our research and providing the necessary, top-of the range equipment to our laboratory, to the recruitment of Lisa, the IBD nurse. For a small, local charity to be able to support this is outstanding and is a strong testament to the efforts of Derek, Jenny and all of the team.  I am extremely impressed by the youngsters who front many of the events held by the Foundation- hearing them speak about their experiences with IBD and their involvement in the charity is very humbling. And, despite everything, they do it all with a smile!

I’d like to take a chance to thank all the participants of my study, without whom this research would not be possible. It was great to talk to those who are affected by IBD and really spurred me on with my studies.

On a personal level I cannot thank the Catherine McEwan Foundation enough for allowing me this opportunity. I truly hope that the work we have conducted will help scientists and clinicians understand IBD further.

 

Guest Blog: Hazel Duncan IBD Research Dietitian

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A bit about me

Hi everyone, my name is Hazel Duncan and I am the newly appointed research dietitian working within the gastro team and based at the clinical research facility at the Queen Elizabeth University Hospital.  I have been based within the gastro team at the Royal Hospital for Children/Yorkhill for the last 5 years.  Throughout my clinical role I have lots of experience of working with families and young people with IBD and I am looking forward to putting all the information I have learnt over the last 5 years to use in a research setting and developing new treatments that we hope will help children with IBD.

A little bit about the research I have done so far

In 2013 I carried out a study supported by the Catherine McEwan Foundation looking at the role of dietary supplements in keeping children with Crohn’s disease well after a course of liquid diet.  This was published in BMC gastroenterology so other teams looking after children with IBD could learn from our experience. At the time of publication there was little research into this area but interest in this area has been sparked by this and work by others.

More recently I have looked at the experience of patients with Crohn’s disease who have long term feeding tubes (PEGs) inserted.  This work also supported by the Catherine McEwan Foundation demonstrated that the feeding tubes had a positive impact on both growth and weight of the children. This work is currently submitted for publication.

Plans for the future

My new role as a research dietitian, along with other members of the team, will be to look at a special diet which will be used on patients with Crohn’s disease to make them better. Currently we use a liquid diet for this but we plan to create a diet using solid food that will hopefully work in the same way.  There has already been preliminary research on healthy adults on this and we are keen to see whether it will help children and young people with Crohn’s Disease too.  Hopefully we will be able to tell you more about this soon.

All of this research could not be possible without the support of The Catherine McEwan Foundation