Patients, Parents and Public

This is the hub for CLUSTER Consortium Patients, Parents and Public.

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Patient and Parent (PPN) Network

A very important part of CLUSTER is engagement with patients, families, charities, the public and national and international collaborative networks, coming together to create the CLUSTER Patient and Parent (PPN) Network.

We will collaborate with all these groups to empower patients and families to help inform and direct CLUSTER research, through developing a patient group, communication and public events.

Useful links and support networks

CHARITIES TO SUPPORT YOU ACROSS THE UK:

Updates and Notices

Data Access Request Approved 

In order to further our research into JIA and JIA-Uveitis, the CLUSTER Consortium have applied for approval to access clinical and biological data of participants of two trials that feed into CLUSTER, SYCAMORE and APTITUDE. The Health Research Authority, on advice from the Confidentiality Advisory Group (CAG), has provided support under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 in order to provide a legal basis to process confidential information without consent.

For participants in these trials, this information will be used to identify your participation and link your data to other JIA studies involved in CLUSTER.

These data will be shared with CLUSTER on 20th October 2022.

If you would like to opt-out of your data being shared with CLUSTER, please contact LCTC (lctcqa@liverpool.ac.uk) on or before this date. After this date, your data will be in the possession of CLUSTER and you should contact the CLUSTER consortium (info@clusterconsortium.org.uk).

CLUSTER Consortium Champions

What are the CLUSTER Consortium Champions (CCC)?

The CLUSTER Consortium Champions (CCC) are individuals who are already members of the CLUSTER NETWORK. They will have the important role of gathering information from the network and represent their views for the CLUSTER Consortium. The CHAMPIONS will express the thoughts, interests and ideas of patients, parents, families, charity representatives, stakeholders and the public. Champions will represent the CLUSTER Patient and Parent Network (PPN) at events, online and at a variety of CLUSTER meetings.

More information can be found on the CLUSTER Consortium Champions page

Our Discoveries

Read more about CLUSTER’s discoveries and research papers in an accessible manner here.

 

Shoop-Worrall SJ, Hyrich KL, Wedderburn LR, Thomson W, Geifman N, on behalf of CAPS the CLUSTER Consortium (2020).

Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study.

Public Summary: https://www.clusterconsortium.org.uk/not-all-jia-is-the-same-cluster-research-identifies-6-ways-that-jia-changes-over-time/

 

    Partners, Charities and Stakeholders

    GOSHCC

    Great Ormond Street Hospital Charity Logo

    Click Here

    Olivia's Vision

    Olivias vision was established n 2010 to provide information, support and advice for anyone affected by uveitis. 

    Click Here

    Versus Arthritis

    Versus Arthritis is a new charity created following the merger of Arthritis Research UK and Arthritis Care. Alongside people living with arthritis, volunteers, healthcare professionals, decision makers and researchers, Versus Arthritis is here to demand and deliver more for the 18.8 million people of all ages living with a musculoskeletal condition in the UK.

    Click Here

    Centre for Adolescent Rheumatology Versus Arthritis

    Based at UCL, UCLH and GOSH, the Centre for Adolescent Rheumatology Versus Arthritis aims to improve the health and wellbeing of adolescents, with arthritis and other rheumatic conditions, by undertaking cutting edge research and ensuring that adolescent patients can be part of research and clinical trial

    Click Here

    Barbara Ansell National Network for Adolescent Rheumatology (BANNAR)

    BANNAR is a group of interested and committed professionals from medical, nursing, allied health professional and third sector backgrounds working in adolescent and young adult (AYA, aged 10-24) rheumatology.

    Click Here

    CCAA (Children Chronic Arthritis Association)

    CCAA incorporating JIA Matters is a small volunteer led charity run by a group of people who have been affected personally by Juvenile Idiopathic Arthritis (JIA) or other paediatric rheumatological conditions. We are passionate about providing support for children with JIA and their families. We hold two annual family support weekends as well as a running a network of local area support groups with local area parent reps.

    Click Here

    JAR Project

    Juvenile Arthritis Research undertake research into JIA and are working to raise awareness that children and young people get arthritis (www.jarproject.org). They have launched the #ThinkJIA campaign to help support early referrals to specialist rheumatology services to enable early diagnosis of JIA (www.thinkjia.org)

    Click Here

    Experimental Arthritis Treatment Centre for Children (EATC4Children)

    EATC4Children is a consortium delivering translational biomedical research, from early lab-based studies to clinical trials, in childhood arthritis and related musculoskeletal disorders.

    Click Here

    YOUR RHEUM

    YOURhuem is a group for 11 – 24 year olds across the UK with diagnosed rheumatic conditions to advise, input and shape current adolescent and you adult rheumatology research

    Click Here

    SNAC (Scottish Network for Arthritis in Children)

    SNAC (Scottish Network for Arthritis in Children)  is a charity formed by parents of children affected by childhood arthritis. It aims to provide a support network for affected families and raise awareness of the condition.

    SNAC, run entirely by volunteers connects families across Scotland and helps to remove the isolation many feel. SNAC hosts educational and fun events for the whole family in collaborations with SPARN (Scottish Paediatric and Adolescent Rheumatology Network) who provide the educational component.

    More info about SNAC can be found on their website www.snac.uk.com

    Click Here

    JIA@NRAS

    The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA).

    Due to its targeted focus on RA and JIA, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions,

    their families and the health professionals who treat them. Their vision is to support all with RA or JIA to live life to the full.

    Click Here

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    How To Get Involved With CLUSTER

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    FAQ

    Q1: Who Can Be Part of the CLUSTER Network

    Everybody who has an association to JIA or Uveitis, and wishes to contribute to or keep up to date with information from the CLUSTER Consortium.