{"id":1603,"date":"2024-07-25T09:09:06","date_gmt":"2024-07-25T08:09:06","guid":{"rendered":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/?p=1603"},"modified":"2024-07-25T09:10:47","modified_gmt":"2024-07-25T08:10:47","slug":"working-with-patient-support-organisations-why-is-this-important","status":"publish","type":"post","link":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/2024\/07\/25\/working-with-patient-support-organisations-why-is-this-important\/","title":{"rendered":"Working With Patient Support Organisations \u2013 Why Is This Important?"},"content":{"rendered":"

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The BSRBR-RA study is fortunate to have strong links with a national patient organisation, National Rheumatoid Arthritis Society (NRAS), and have held numerous focus groups, surveys and meetings with them to ensure that the patient voice is always considered within the research that is carried out.<\/p>\n

We spoke to NRAS CEO Clare Jacklin (pictured) before her retirement at the end of July 2024, to reflect on our links and look to see what the future holds. Thank you, Clare, we wish you all the best for your retirement!<\/p>\n

\"Clare<\/p>\n

Q: How long have you worked at NRAS?<\/h2>\n

CLARE<\/strong>: I joined NRAS in 2007 as a Volunteer Manager and spent most of those first years travelling the length and breadth of the UK setting up NRAS groups and training volunteers. I progressed then onto Director of External Affairs taking on more responsibility with working with industry partners and wider rheumatology community including researchers and in 2019 took over as CEO from founder Ailsa Bosworth. Just in time for the pandemic to hit!…Great timing.<\/p>\n

Q: What has been the best thing about working at NRAS?<\/h2>\n

CLARE<\/strong>: Best thing has to be meeting so many of the most amazingly stoic, incredible people living with RA or JIA and doing my bit to make life better for the thousands of them across the UK. The feel-good factor you get from trying and hopefully succeeding to make a difference to people\u2019s lives by influencing services, research, support, education etc. is just the best.<\/p>\n

Q: Why is working with research studies like the BSRBR-RA and UK JIA Biologics Register so important for NRAS?<\/h2>\n

CLARE<\/strong>: It\u2019s all very well clinical trials during drug development proving efficacy etc. but it\u2019s truly on in \u2018real\u2019 world evidence gathering that the true impact\/effect of medications can be measured on \u2018ordinary\u2019 people. Recruitment to drug trials can\u2019t always reflect the wide range of people who will be on the medications when they come to market. There is no such thing as the \u2018average\u2019 RA or JIA patient! These complex conditions rarely fly solo and most people with inflammatory arthritis also have other conditions which would often exclude them from clinical trial participation. These registers ensure that long term evidence on a wide and diverse population can be gathered and provide much needed reassurance of drug efficacy or indeed alert to potential harmful drug interactions and impacts for certain patients.<\/p>\n

For us (a national patient organisation) we can then keep our beneficiaries fully informed of the latest studies made possible by the registers.<\/p>\n

Q: What, in particular, is the one thing that you are most proud of during your collaboration with the BSRBR-RA and UK JIA Biologics Registers?<\/h2>\n

CLARE<\/strong>: I think it has to be just making more people aware of the brilliant work being carried out by researchers utilising the data from the registers, and being able to share such information in an accessible and lay format.<\/p>\n

Q: Why is it so important to continue this collaboration and what would be on your tick list for NRAS\/BSRBR-RA\/UK JIA Biologics Registers to achieve together in the future?<\/h2>\n

CLARE<\/strong>: For all the reasons mentioned above, that \u2018real \u2013 world\u2019 data evolves to reflect changing lifestyles and treatment regimens such evidence gathering will continue to \u2018teach\u2019 the rheumatology community how inflammatory arthritis may evolve and require different treatment approaches in the future.<\/p>\n

Top of my \u2018tick list\u2019 for research has to be menopause and inflammatory arthritis. How does HRT interact with DMARDs or Advanced Therapies? How can symptoms of RA and menopause be distinguished from each other?<\/p>\n

Next on my list especially regarding young people with JIA but also people with RA is the potential impact of vaping. So many young people are taking up vaping despite never having smoked\u2026.will this lead to a rise in JIA diagnosis? More severe JIA symptoms if a child\/young person vapes? Same with RA, we know that smoking can reduce efficacy of prescribed medications but does Vapes do the same?<\/p>\n

The third one on my hit list would have to be for the JIA register \u2026looking at the link between JIA and down syndrome?<\/p>\n

Always more questions than we may ever have answers for.<\/p>\n

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Related<\/h1>\n

Related posts:<\/h3>
<\/div>
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BSRBR-RA API Scheme<\/h2><\/div><\/div><\/a>
<\/div>

Participant Data Journey -what happens to the data?<\/h2><\/div><\/div><\/a>
<\/div>

Meet a Register Champion<\/h2><\/div><\/div><\/a><\/div>
<\/div><\/div><\/div>\n

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Contact Us<\/h4>\n

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+44 (0) 161 306 6000<\/p>\n

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Find Us<\/h4>\n

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The University of Manchester
Oxford Rd
Manchester
M13 9PL
UK<\/a><\/p>\n

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Connect With Us<\/h4>\n

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