Arthrities Research UK

Project lead: Meredyth Wilkinson

Investigating the immune system of young people that have Juvenile Dermatomyositis (JDM)

• Patients with JDM of all ages being cared for by UCLH or GOSH will be invited to take part or those already participating in the JDRG study.

• Each person that would like to be a part of the study will be asked to give a blood sample.

• We would like to gain a blood sample from each person before they start any treatment, during treatment (1 year after diagnosis) and when the symptoms have become stable or resolved.

• The blood samples will enable us to isolate the B cells and examine their role in the disease in detail.

• If you have JDM and are being cared for at UCLH or GOSH, please discuss this with the nurse or doctor when you next attend clinic if you would like to take part. For more questions please contact Dr. John Ioannou via the Centre Research Co-ordinator – Hema Chaplin – h.chaplin@ucl.ac.uk

Project lead: Mr George Robinson

Understanding the immune system of juvenile-onset Lupus (JSLE): could targeting fat metabolism control disease progression and reduce cardiovascular risk?

Anyone with JSLE cared for at UCLH will be invited to take part as the study plans to look at JSLE at different ages and the impact of puberty on the immune system.

Also adults with their lupus starting before the age of 18 (juvenile onset) or starting when they were over 25 (adult onset).
Males and females included as the project plans to look at the different response of males and females to hormones and other factors that may drive lupus.

• Each person that would like to be a part of the study will be asked to give a blood sample.
• The blood samples will enable us to investigate how fat is metabolized in the immune cells and look at the role of hormones in this disease in detail.
• If you have JSLE and are being cared for at UCLH, please discuss this with the nurse or doctor when you next attend clinic if you would like to take part. For more questions please contact Dr. John Ioannou via the Centre Research Facilitator – Hema Chaplin – h.chaplin@ucl.ac.uk

Project Lead: Dr. Kate Webb

Investigating how the immune system changes during adolescent development

• Patients with Lupus aged between 13-19 yr being cared for by UCLH will be invited to take part.

We also ask young people without rheumatic disease to participate through inviting friends of those with JIA or Lupus or through contacting secondary schools. We may also invite young people being cared for by doctors who are not rheumatologists, (such as those that look after problems with hormones i.e. endocrinologists) to take part.

• For all those taking part the stage of puberty will noted (through asking some simple questions related to this).

• Blood samples (4 table spoons) will be taken at the same visit.

• This will be repeated every few months around 2-4 times.

• The blood samples will be looked at in the laboratory for different substances that relate to adolescent physical development through puberty and Lupus.

• Through this study, we will gain an understanding as to what makes Lupus switch on during adolescence. This information can then be used to develop ways that we can affect these biological switches.

• If you have Lupus, are 13-19 years and are being cared for at UCLH, please discuss this with the nurse or doctor when you next attend clinic if you would like to participate. For more questions please contact Dr. John Ioannou via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

Project lead: Dr. Corinne Fisher

Understanding ERA in order to develop better treatment

• Patients with JIA aged between 13-19 yr being cared for by UCLH will be invited to take part. We also ask young people without JIA to take part through inviting friends of those with JIA or through liaising with secondary schools.

• This study involves donating an extra blood sample (4 table spoons) when having routine blood tests. There are no other extra visits to the hospital involved.

• The cells in the blood sample are then tested by Dr Corinne Fisher in the laboratory to see how likely they are to cause inflammation.

• This information should lead to us understanding what it is about the body the can lead to ERA.

• If you have ERA, are 13-19 years and are being cared for at UCLH, please discuss this with the nurse or doctor when you next attend clinic if you would like to take part. For more questions please contact Dr. Corinne Fisher via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

Project lead: Dr. Timothy Bray

Developing an MRI scanning score in enthesitis related arthritis

• If you have ERA and are being cared for at UCLH and wish to be involved with this study please let your Doctor or nurse know at the next clinic appointment

• The study involves having an MRI scan and the image of the scan is then analysed by special computer software that generates a score that may relate to how severe the arthritis is.

• If you would like to find out more information please contact Dr. John Ioannou via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

Who can volunteer for the project?

• Anyone with early-onset Juvenile Idiopathic Arthritis will be asked to take part in this study.
• Each person who is interested in taking part will be asked to give a blood and a stool sample.
• The blood cells will help us to analyze how immune cells are different in children with arthritis, while the stool samples will help us understand whether the bacteria that lives in the gut, known as the “microbiota” is different in children with arthritis.
• If you would like to find out more information please contact Prof Lucy Wedderburn via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

Project Leads: Alice Cai and Despina Eleftheriou

Improving adolescent health care and outcomes in arthritis through service quality and technology

Who can volunteer for the toolkit project?
• We would like to invite patients with rheumatic disease such as JIA, Lupus or JDM aged 10-24 years to take part in focus groups or interviews to evaluate the toolkit. If you are interested in taking part or have any questions then please contact the Centre Research Facilitator – Hema Chaplin – h.chaplin@ucl.ac.uk

Who can volunteer for JIApp project?

• We would like to invite patients with JIA aged between 10-24 years old who are cared for UCLH or GOSH to take part in a study where you can try out the app.
• Young people with JIA will be given the app to use for 12 weeks.
• Young people with JIA will also be given questionnaires to complete at baseline and after using the app. The questionnaires will cover issues relating to symptoms, mood, well-being, self-management, and thoughts on the app. These should take around 20-30 minutes to complete.
• If you have JIA, are 10-24 years and are being cared for at UCLH or GOSH, and are interested in taking part, then please discuss this with your Rheumatologist at UCLH or GOSH when you next attend clinic. For more questions please contact Dr. Despina Eleftheriou via the Centre Research Facilitator – Hema Chaplin – h.chaplin@ucl.ac.uk

Project lead: Ms. Ania Radziszewska

Storage of biological samples such as blood that feed into lots of research projects

Everyone that attends the adolescent clinic at UCLH who has JIA, lupus, JDM, Sjogren’s syndrome or any other disease that is due to inflammation will be invited to donate a blood sample (4 table spoons). Pending approval we also hope to be able to invite patients aged 13 years and above being cared for at GOSH.

• We would also like blood samples from young people without these conditions to compare.

• If you would like to take part and donate a blood sample to this research effort please contact Linda Suffield via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

National study we are taking part in:

Belimumab treatment in childhood lupus

• This study is being undertaken at GOSH and UCLH. Children and young people with JSLE being treated at GOSH or UCLH will be invited to participate in the study.

• Patients willing to take part in the study will be firstly screened to establish whether it is possible to take part in the study. They will then receive the new medicine and will be closely monitored to establish if their disease is responding to treatment and whether they tolerate the drug well. This involves regular visits to the hospital and regular blood tests.

• If you would like more information please contact Dr. Despina Eleftheriou via the Centre Research Co-ordinator – Brenda Bell  – brenda.bell@ucl.ac.uk

National study we are taking part in:

Identify what happens in the short and long-term future in JIA

• Patients diagnosed with JIA will be invited to participate in this study.

• Both patients and parents are given detailed information about the study.

• Questionnaires are given to both the parent and patient to complete and these require completion yearly.

• Clinical information from some of the clinic visits is also collected by the rheumatologist and nurse.

• This information is sent to the study Centre in Manchester and stored on a computer with no identifiable details such as name or address.

• A blood sample or sample of saliva is taken and this is used to purify DNA which is stored also in a freezer.

• If you would like more information please contact Linda Suffield via the Centre Research Co-ordinator – Brenda Bell  – brenda.bell@ucl.ac.uk

National study we are taking part in:

Working out what genes are important in JIA

• Patients with JIA (who are not enrolled into the CAPS study) will be invited to supply a sample of saliva – given as spit into a small specimen pot or small amount of blood.

National study we are taking part in:

Improve treatments and understand long-term outcomes in JSLE

• Patients with JSLE will be invited to participate in this study.

• At each visit to the rheumatologist or nurse records clinical information relating to lupus.

• The patient also completes a short form at each visit related how they get on with simple daily tasks.

• This information is sent to the study Centre in Liverpool and stored in an anonymised fashion, which means no identifiable information such as name or address is stored.

• 2 blood samples are also taken (around 2 table spoons) and DNA is purified from one of these and stored in Liverpool.

• If you would like more information please contact Linda Suffield via the Centre Research Co-ordinator – Brenda Bell  – brenda.bell@ucl.ac.uk

National study we are taking part in:

Improve treatments and understand long-term outcomes in JDM

• Patients with JDM will be invited to participate in this study.

• At each visit to the rheumatologist or nurse records clinical information relating to JDM such as the results of muscle power tests and treatment.

• The patient also completes a short form at each visit related how they are functioning on in simple daily tasks.

• This information is sent to the study at the Institute of Child Health (linked to Great Ormond Street) and stored in an anonymised fashion (which means no identifiable information such as name or address is stored.)

• Blood samples are also taken every year and DNA purified from one of these and stored at ICH.

We have also set up the JDRG Young Person’s Advisory Group who meet regularly to give advice on JDM specific projects, help set research priorities and tell the researchers what questions are most important for them as young people with this condition to be answered.

• If you would like more information please contact Linda Suffield via the Centre Research Co-ordinator – Brenda Bell  – brenda.bell@ucl.ac.uk

National study we are taking part in:

Understanding why children respond or fail to respond to treatment for Juvenile Idiopathic Arthritis

• Patients diagnosed with JIA starting either methotrexate or anti-TNF therapy will be invited to participate in this study.
• For patients who have already started one of these treatments, one small blood or saliva sample for DNA analysis will be taken. Patients who are about to start one of these treatments, will be asked for a small blood sample (1-3ml) at 0 and 6 months of treatment.
• All samples will be stored in an anonymised fashion at the Institute of Child Health (linked to Great Ormond Street Hospital). The samples are then analysed to see if there are any markers in the blood or DNA that can help to predict which children will respond to methotrexate.
• By collecting data before and after treatment we look at what tests could be used to predict this response. We have found some markers in the blood which predict this and continue to look further for more.
If you would like more information please contact Emily Robinson or Clare Heard via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk.

National study we are taking part in:

Monitor treatments and understand short and long term outcomes in JIA taking biologic treatments (but not Etanercept)

• Patients with JIA seen at GOSH or UCLH who have started taking Etanercept (Enbrel) or methotrexate in the last 6 months will be invited to participate in this study.
• A past medical history questionnaire is filled in by nurse once at the beginning, as well as things normally completed in clinic such as joint count and medications list, and an activity questionnaire is filled in by the young person and then sent to centre in Manchester. During subsequent visits to clinic, at 6 months, 1 year then every year after that first visit, information from medical records is taken such as joint counts and medications list as well as the activity questionnaire.
• This information is sent to the study Centre in Manchester and stored in an anonymised fashion, which means no identifiable information such as name or address is stored.
• One off blood sample is also taken at any point of the 5 year follow up (around 2 table spoons) and DNA is purified and stored in Manchester.
• If you would like more information please contact Francesca Josephs via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk

National study we are taking part in:

Monitor treatments and understand short and long term outcomes in JIA taking biologic treatments (but not Etanercept)

• Patients with JIA seen at GOSH or UCLH who have started taking biologic treatments e.g. Humira, Infliximab, or Methotrexate in the last 6 months will be invited to participate in this study.
• A past medical history questionnaire is filled in by nurse once at the beginning, as well as things normally completed in clinic such as joint count and medications list, and an activity questionnaire is filled in by the young person and then sent to centre in Manchester. During subsequent visits to clinic, at 6 months, 1 year then every year after that first visit, information from medical records is taken such as joint counts and medications list as well as the activity questionnaire.
• This information is sent to the study Centre in Manchester and stored in an anonymised fashion, which means no identifiable information such as name or address is stored.
• One off blood sample is also taken at any point of the 5 year follow up (around 2 table spoons) and DNA is purified and stored in Manchester.
• If you would like more information please contact Francesca Josephs via the Centre Research Co-ordinator – Brenda Bell – brenda.bell@ucl.ac.uk