Paediatric Rheumatology CSG

MCRN/arc Paediatric Rheumatology CSG

The Medicines for Children Research Network (MCRN) and Arthritis Research Campaign (arc) and have formed a 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.

Responsibilities of the CSG

• 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
• 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 viewed here.

CSG Scientific Membership

• The initial scientific membership of the CSG has been appointed in accordance with the terms of reference document

CSG Meetings/Minutes

• Face-to-face meetings take place approximately 2-3 times / year. The first meeting of the CSG was held on 28th January 2008. Please click here for the minutes. A further meeting was held on the the 8th July 2008 - please click here for the minutes.
• Monthly teleconferences also take place and the minutes are available below:

Setting a strategy and process of development

• 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:

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 with the support of the CSG. 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 arc’s new Clinical Trials Initiative
  

Consumers Involvement

• This has been actively developed in close collaboration with the MCRN Consumer Liaison Officer. Following widespread publicity, consumer representatives have been appointed to the CSG. Pilot models are being set up for consumer comment on the wider CSG agenda while groups related to specific TSGs have already taken place. 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 with summary information and direct links to this website made available through the BSPAR and arc websites.

Contact details

For all enquiries and additional information, please contact: Dr Michael Beresford, Chair of the Paediatric Rheumatology CSG, or Ms Laura Pilkington CSG Administrator at the MCRN.

Deadlines approaching

• Clinical Research Fellowships
  05/01/2009
• AHP Educational Training Bursaries (full course)
  05/01/2009
• AHP Educational Training Bursaries (short course)
  12/01/2009
• View all deadlines