CRN: Children / Arthritis Research UK Topic
Specific Group 6a (JIA)
Minutes for F2F Meeting Wednesday 21st January
2015 12.30-1600
Attendance: FM WT GA TA ES WA EM AK RA AK
Apologies: HF KH SL JM
2014: Year in Review
Aims JIA TSG:
The JIA TSG aims to develop and support a portfolio of clinical
studies and clinical trials in JIA and JIA-associated uveitis.
Promote successful research in children with JIA in the UK.
•NIHR Portfolio.
•Define research priorities in JIA.
•Engagement with local researchers.
•Identify and address barriers to clinical research.
Membership JIA TSG:
The JIA TSG comprises 17 members (9 consultants / clinician
academics, 2 academics, 6 trainees and I specialist nurse).
40 members of the wider community attended the 2014 BSPAR
JIA TSG meeting.
The group meets monthly by teleconference and biannually face
to face.
Activity JIA TSG:
1) Support recruitment to NIHR Portfolio clinical studies and
clinical trials. Much discussion around how this could be
improved. Consensus that need to improve dissemination
of information about Portfolio studies around our
community.
2) Important achievements JIA TSG:
•Multicentre audit (TSG JIA Outcomes Audit).
•HQIP Expert Group activity.
•Revision of JIA Key Research Priorities.
•3 key research questions for CSG (PICO format).
•Collaborative work (Clinical Affairs (Interim statement
and commissioning) and CSAC / Trainees(research
competencies)).
HQIP Project: Progress and Process Update
GA/WT presented a summary of progress to date, outlining the
five related workstreams. There was discussion around the
iterative process of audit design and the importance of
identifying clear, feasible audit questions. The questions to be
answered will change over time. Feedback from the adult
inflammatory arthritis audit:
- Need a clear research question.
- Consider using a cross-section of patients with
established JIA to allow for retrospective data
collection.
- Audit tool needs to be user friendly and not too long.
JIA TSG agreed to consider possible audit questions. May need
to postpone assessing damage as currently not feasible in the
clinical setting.
Happy to continue acting as HQIP expert group and keen to
support HQIP with pilot project asap.
Action Points:
TSG to discuss possible audit questions.
PICO 1: Does an antiemetic drug given at time of starting
Methotrexate reduce the incidence of methotrexate-related
nausea and vomiting (both anticipatory and post methotrexate
nausea and vomiting)?
PICO 2: The Impact of Treating to Target on Disease Related
Outcomes in Children with Juvenile Idiopathic Arthritis
PICO 3: Optimising Access to Specialist Care for Children with
Musculoskeletal Disease Through Triage in Primary Care
Each PICO was summarised in more detail including work to
date and plans for 2015. Discussion around the importance of
the JIA TSG supporting clinicians to develop their own research
ideas. Encouraging individual clinicans to answer the questions
important to them should help address some of the important
clinical issues in JIA.
Action points:
TSG to consider how to share information about process and
potential pitfalls for clinicians interested in clinical research (eg
mentoring system, webinars (lessons I have learned etc).
2015 Onwards: Aims, Objectives and Future Priorities
The JIA TSG aims to:
–Define research priorities in JIA: work ongoing and progress
has been made. Need to continue to address research priorities
and support local teams moving forwards.
–Support the development of a portfolio of clinical studies and
clinical trials addressing research priorities for JIA in the UK:
1) NIHR Portfolio studies: Can we improve recruitment?
Consider a piece of work identifying the proportion of
eligible children with JIA recruited to the registries
(?trainees).
2) Barriers to clinical research:
•Trainees: Inadequate exposure to clinical research.
•Patients: Inadequate understanding and awareness of
clinical research.
•Clinicians: Inadequate awareness of current clinical
research.
•Studies: Inadequate high quality studies for all subtypes
of JIA.
Action points:
- TSG to discuss multicentre survey of recruitment to Portfolio
studies
- Continue to support research competencies for trainees
- Consider developing information leaflets for patients / COPD.
- To link with SD and parents group.
- Improve information flow to clinical teams: Identify a research
lead, regular updates on portfolio studies (?ES) and regular
updates from TSG’s.
- Continue to support clinicans to develop their own clinical
ideas.
2015 face to face and teleconference meeting dates
Friday 27th February (0845-0945)
Friday 27th March (0845-0945)
Friday 24th April (0845-0945)
Friday 26th June (0845-0945)
Friday 28th August (0845-0945)
Friday 25th Sept (?F2F BSPAR)
Friday 30th October (0845-0945)
Friday 27th November (0845-0945)
21/01/2015 FM