Across the UK, more children and young people with Juvenile Idiopathic Arthritis (JIA) are now starting tofacitinib. Although numbers remain small, each case provides crucial real world data that can improve care for the whole JIA community.   

Yet we know from recent feedback that many eligible patients are not yet being approached or recruited to the national UK JIA Biologics Register – the BCRD Study. We want to change that – and we need your help. 

Why Tofacitinib Recruitment Is a Priority 

Tofacitinib remains a relatively uncommon treatment choice in JIA, making every eligible patient especially valuable for understanding outcomes, safety, and treatment pathways. The BCRD team has already seen registrations in this cohort, but we have indications that many more children could be included if sites are aware of how flexible and supportive the process can be.  

Because numbers are small, even a handful of additional recruits can significantly enhance the power of national data and strengthen guidance for clinicians and families. 

Flexible Recruitment Windows – Including Retrospective Inclusion 

Participants can be approached for recruitment any time after they have started treatment with tofacitinib as long as the required follow-up data can be provided.  

You can recruit retrospectively, even if the treatment has since been discontinued. 

This applies to: 

• Children starting tofacitinib, not previously registered with BCRD 

• Children already registered on BCRD under a different therapy, who can now be re-registered in the tofacitinib cohort and given a new ID number 

• BSPAR Etanercept Study participants starting treatment with tofacitinib who can be re-registered with BCRD.  

We know that real world clinic pressures, staffing challenges, or difficulty contacting families can make timely recruitment difficult so please do contact us to discuss any potential participants who may have slipped through being approached for recruitment.  

Funding Available for Every Recruited Participant 

Don’t forget: 

Up to £350 is available per tofacitinib participant recruited. 

This includes £50 per baseline and followup form submitted, helping to support research teams and offset capacity pressures.  

Multiple centres told us that research staffing shortages were a barrier to recruitment, so we hope this funding helps make the process more achievable locally.  

We’re Supporting Centres with New Tools and Alerts 

Based on your feedback, the BCRD team has implemented several improvements to make it easier to identify eligible patients: 

• Automatic alerts will now flag when an existing BCRD participant (under 18) starts tofacitinib, prompting sites to reregister them. 

• Lists of eligible ‘re-registration’ participants are being shared proactively 

• Updated promotional materials are available for you to share within your teams, including reference guides and recruitment flow charts 

What We’re Asking from Centres 

To support this important national effort, we ask that your team: 

1. Identify all children and young people who are already receiving tofacitinib or who are about to start  
2. Approach families about BCRD participation at the time of treatment decision, or at the next suitable appointment if they are already on treatment. Remember, study materials can be posted out to families and consent taken remotely, if there is no upcoming clinic visit.  
3. Let us know of any barriers, such as research capacity or uncertainty around eligibility—your feedback directly informs how we improve the process. 
4. Use the simplified reregistration process for patients switching treatments within BCRD or from BSPAR Etanercept Study.   

Together, We Can Capture the Full Picture 

Children starting tofacitinib are rare – and because they are rare, every single recruit matters. Centres have told us repeatedly that they want to support this work, and many already feel well supported by the JIA Biologics team and local CRF staff. 

By working together, we can make sure these young people are represented in national data, strengthen future evidence, and ultimately improve care for the JIA community. 

If your centre can start or boost recruitment – even by a handful this year – it will have a meaningful impact. 

If in any doubt at all about whether to approach a patient for recruitment, please do contact the team to check – Praksha.jariwala@manchester.ac.uk. 

Thank you for your support.  

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