Medicines for Children Research Network (MCRN) and Arthritis Research Campaign (arc) and have formed a unique partnership in establishing a new “MCRN/arc Paediatric Rheumatology Clinical Studies Group” within the existing structures of the MCRN and arc Clinical Studies Groups (CSGs).

This partnership of expertise between the MCRN and arc offers a major opportunity to developing a comprehensive and long lasting research programme for paediatric rheumatology in the UK.

CSG - Latest News

Vacancy - Allied Health Professional
Vacancy - Clinical Nurse Specialist

Responsibilities of the CSG
1. Reactive and Proactive - To support and develop a portfolio of clinical studies directed towards and including clinical trials in all areas of paediatric rheumatology across the UK
2. Advisory - To advise the MCRN and arc in defining research priorities in paediatric rheumatology for their support and subsequent adoption to run through the MCRN

Remit
The Remit of the CSG and its Members includes:
• To be responsible for developing and overseeing a comprehensive portfolio/strategy for clinical trials and related studies covering the spectrum of major disease areas in paediatric rheumatology
• To propose and develop new trials and other well-designed studies, to consider trials proposed by others, and advise the MCRN and arc
• To provide specific advice to investigators
• To ensure consumer involvement in all activities
Full details of the Remit and Terms of Reference of the CSG can be here. Paed Rheum CSG - Remit & Terms Reference 151007

CSG Scientific Membership
• The initial scientific membership of the CSG has been appointed in accordance with the terms of reference document Paed Rheum CSG - Scientific membership - Dec 07
• Although there were no initial applicants for Clinical Nurse Specialist Representative and Allied Health Professional Representative, following consultation, these posts will be re-advertised in June 2008

CSG Meetings / Minutes

• Face-to-face meeting take place approximately 2-3 times / year. The first meeting of the CSG - 28th January 2008. Please click here for the minutes Paed Rheum CSG Mtg - Jan 08 - Minutes
• Monthly teleconferences also take place:
• April ’08: Paed Rheum CSG - Summary – 070408
• May ’08: Paed Rheum CSG teleconference 060508
• June ’08:

Setting a strategy and initial progress
• The key priority for the new CSG is the development of a comprehensive research strategy for clinical trials and related studies in paediatric rheumatology. This is taking place through wide-ranging open consultation with relevant stake-holders with inclusive participation
• The principle means of communicating this process is via the MCRN, arc, and BSPAR websites. In addition, regular e-circulars continue to be sent to the entire BSPAR membership drawing their attention to the process. Anyone wanting specific notification who is not a member of BSPAR can contact the CSG Administrator with details.
• The developing strategy will be updated regularly and published on the respective websites to ensure open opportunity for participation

Topic Specific Groups
• The CSG agreed to establish Topic Specific Groups (TSGs) to focus the development of the CSG’s strategy and support the development of study protocols. The CSG will agree the overall strategy guided by the input from them.
• The TSGs are principally disease-based, but each will address common “themes” (including: acceptability of intervention; quality of life; health economics; cardiovascular risk; skeletal health; rare diseases and orphan drugs; UK and International avenues) and “themes” (including: characterised phenotype cohort studies; biomarkers; genotype/phenotype/proteomics; pharmacogenomics; pharmacokinetic studies; mechanism of disease; Phase II and III studies. Strategic development of protocols is underway.
• All those interested in participating in this strategic development are warmly invited to engage with one or more of the TSGs. Those approaching the CSG with relevant study ideas will be directed in the first place to these TSGs. In this way they can both contribute to the decision process and be aware of what is happening elsewhere in their field.
• Each Topic Specific Group will have a link-person from the CSG Scientific Membership to ensure integration into the whole CSG portfolio that will facilitate its activity. Please contact them directly if you are interested or the CSG Chair. Clinical and Multi-disciplinary participation is warmly encouraged.
• Minutes of meetings/tele-/video-conferences of these Groups will be submitted regularly to the CSG Chair and summary updates published on the website. Costs for meetings/conferences must be agreed a priori with the CSG Chair / Administrator
• The following TSGs have been established:

Topic Specific Group	CSG Link	Email of CSG Link	Initial Developments	Specific TSG activities
Auto Inflammatory Diseases	Professor Patricia Woo	Patricia.Woo@ucl.ac.uk	Tocilizumab Trial (systemic JIA) adopted; developing links with European collaborators
Bone Health	Dr Madeleine Rooney	m.rooney@qub.ac.uk	Priority support for POPS Trial. Process of convening Paediatric Bone-Health meeting
Formulations & Pharmacy (Priorities dependent on TSGs)	Dr Utpal Shah	Utpal.Shah@RLC.NHS.UK	Scoping exercise sent to BSPAR community – priorities of formulation / palatability issues
Juvenile Dermatomyositis	Dr Lucy Wedderburn	l.wedderburn@ich.ucl.ac.uk	Building on JDM Research Group (TSG open to all);	Invitation JDM TSG Conference - 07/08/2008
Juvenile idiopathic arthritis	Professor Helen Foster & Dr Wendy Thomson	h.e.foster@ncl.ac.uk wendy.thomson@manchester.ac.uk	To convene a “CSG Biologics in Paediatric Rheumatic Diseases” to consider related issues; BSPAR Research Day 8th July – initial scoping of ideas (e.g. Ultrasound in JIA)
Juvenile-onset SLE	Dr Michael Beresford	m.w.beresford@liverpool.ac.uk	Building on UK JSLE Study Group – Steroids in JSLE; MMF and cyclophosphamide in severe JSLE; B-cell depletion in JSLE; paediatric BILAG
Childhood Scleroderma	Dr Eileen Baildam	Eileen.Baildam@RLC.NHS.UK	Possible link with PRES Systemic Sclerosis Study; localized scleroderma intervention?
Uveitis in JIA	Dr AV Ramanan	avramanan@hotmail.com	Meeting 20th June to consider strategic priorities, and potential interventional trial
Vasculitis	Dr Paul Brogan	p.brogan@ich.ucl.ac.uk	MYCYC Trial adopted with support of CSG; Links with EUVAS; development of biomarkers

ERA NET Program
• The CSG has strongly encouraged the whole BSPAR membership and each of the TSGs to contribute to this process.

Initial approaches to the CSG
• A number of protocols for trials and related studies are already being directed towards the CSG. For those studies / trials already funded, they will be processed according to MCRN guidelines. • Protocols at an earlier stage in development will be supported in every possible way, and be assessed on their own merits, in the light of the evolving research strategy. Key trials / related studies may be supported at an early stage in this process if central to the future research strategy. • All proposals seeking specific arc support will be processed in accordance with the arc’s new Clinical Trials Initiative (http://www.arc-research.org.uk/med_director/clintrialsupdate.asp)

Consumers Involvement
• This is being actively developed in close collaboration with the MCRN Consumer Liaison Officer, Jenny Preston (jennifer.preston@mcrn.org.uk) • Two pilot models are being set up for patients and their parents looking at the wider CSG agenda, and that of a topic specific group. A letter has been sent to the entire BSPAR Community asking for examples of established local consumer groups that may like to be involved. • The MCRN are developing a Database of Consumers / Shadow Consumer Panel in all disease areas including Paediatric Rheumatology

Industry Liaison Groups
• Important to the future work of the CSG, a panel of potential industrial partners interested in the future portfolio of the Paediatric Rheumatology CSG is being established. Any interested parties should approach the Chair or one of the CSG Members

Websites
Details of all activities, supported trials / studies and the proposed research strategy of the CSG will be made available through the MCRN Website (http://www.mcrn.org.uk/) with summary information and direct links to this website made available through the BSPAR (http://www.bspar.org.uk/) and arc (http://www.arc-research.org.uk) websites.

Contact details
For all enquiries and additional information, please contact: Dr Michael Beresford, Chair of the Paediatric Rheumatology CSGm.w.beresford@liverpool.ac.uk, or Ms Laura Pilkington, CSG Administrator at the MCRNjennifer.blakeburn@mcrn.org.uk

Correspondance from CSG Chair to BSPAR Members
1. Call for CSG Members: Paed Rheum CSG - BSPAR Members - Ltr 01/10/07
2. CLRN Priorities: Ltr to BSPAR - CLRN priorities 10/12/07
3. Notice of CSG Meeting January 2008: Ltr BSPAR - Paed Rheum CSG - 01/08
4. Response tp Prof Stephenson - CLRNs: Ltr BSPAR - Re Stephenson Letter - 11/02/08
• With Links to:

» ARC Arthritis Research Campaign

» MCRN Medicines for Children Research Network