{"id":1751,"date":"2025-04-14T15:00:46","date_gmt":"2025-04-14T14:00:46","guid":{"rendered":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/?p=1751"},"modified":"2025-04-14T15:00:46","modified_gmt":"2025-04-14T14:00:46","slug":"celebrate-your-registers-collaboration-successful-collaboration-with-patient-groups","status":"publish","type":"post","link":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/2025\/04\/14\/celebrate-your-registers-collaboration-successful-collaboration-with-patient-groups\/","title":{"rendered":"Celebrate your registers! Collaboration: Successful collaboration with patient groups"},"content":{"rendered":"

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The BSRBR-RA regularly collaborates with patient support groups to guide the direction of their research. <\/span><\/span><\/h3>\n

This involvement can take place through the \u2018Registers and Research Committee\u2019 at the British Society for Rheumatology, where lay members and patient groups are invited to comment on research papers or review study documentation. Additionally, the BSRBR-RA sometimes partners with patient advocacy groups.\u00a0<\/span><\/span><\/p>\n

National Rheumatoid Arthritis Society (NRAS)<\/h3>\n

In January 2023, BSRBR-RA collaborated with the National Rheumatoid Arthritis Society (NRAS) to launch a survey aimed at individuals with RA to <\/span>identify<\/span> research priorities. Within just two hours, 994 people with rheumatoid arthritis had completed the survey, highlighting their eagerness to have their voices heard.<\/span> Some results are shown in the graphic here:<\/span><\/span>\u00a0<\/span><\/p>\n

\"\"<\/p>\n

Many of these issues have been addressed in existing research, which <\/span>demonstrates<\/span> that it is important that these results are shared in an understandable format with the wider community. L<\/strong><\/span>ay summaries<\/strong> and infographics<\/strong><\/span> for the research papers are produced and are now shared with patient organisations to distribute to their members \u2013 these can all be found on the <\/span><\/span>study website.<\/span><\/span><\/a>\u00a0<\/span><\/p>\n

More information:<\/b>\u00a0<\/h3>\n

Support your registers! click <\/span>here<\/span><\/a> for further information<\/span>\u00a0<\/span><\/p>\n

Contact us – <\/span>biologics.register@manchester.ac.uk<\/span><\/a>\u00a0<\/span><\/p>\n

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Related<\/h1>\n

Related posts:<\/h3>
<\/div>
<\/div>
<\/div>

Celebrate your registers! Development: Encouraging researchers<\/h2><\/div><\/div><\/a>
<\/div>

Patient follow-up questionnaires<\/h2><\/div><\/div><\/a>
<\/div>

Celebrate your registers! Collaboration: Collaboration with international research groups<\/h2><\/div><\/div><\/a><\/div>
<\/div><\/div><\/div>\n

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

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

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