RECORDER Project

Research in Complex Rare Diseases - Exemplars in Rheumatology
@DrFiona_Pearce @lanyon_peter @meganlizi
#rarediseases

[RECORDER Project @RecorderUK]

On #RareDiseaseDay, help shine a light on the realities of work with a rare condition.

If you’re in the UK and living with a rare disease (or retired since diagnosis), share your experience in our 15-min survey: https://t.co/fsl4PqLG1m

Your voice can drive change #RareDisease

[RECORDER Project @RecorderUK]

If you live in the UK and have a rare condition, please take part and share. Together, we can drive better support at work.
🔗 https://t.co/HDtjqP7yHn #RareDisease #WorkAndHealth

[RECORDER Project @RecorderUK]

If you live in the UK and have a rare condition, please take part and share. Together, we can drive better support at work.
🔗 https://t.co/HDtjqP7yHn #RareDisease #WorkAndHealth

[RECORDER Project @RecorderUK]

📢 This #RareDiseaseDay, we’re launching a UK-wide survey on employment experiences while living with a rare disease.
Co-developed with people living with rare autoimmune rheumatic diseases, your voice will help spotlight the realities of work, barriers, and what needs to change.

[Health Data Research UK (HDR UK) @HDR_UK]

📢 UK health data should be recognised as "critical national infrastructure".

Published today, the #SudlowReview offers critical insights into how we can safely and securely use data science to improve health services across the UK.

➡️ Learn more: https://t.co/J8PmVP5mdB

[Understanding Patient Data @Patient_Data]

New public opinion polling shows a majority of the public prefer the use of de-identified data over identifiable data for planning and population health, and are comfortable with the NHS having automatic access to data for these purposes.

Read more👇
https://t.co/MKDxAnMxLo

[RAIRDA @RAIRDA_org]

Are you living with lupus, scleroderma, myositis or vasculitis? @RecorderUK are holding an event on Saturday the 15th June for patients and carers, to make sure their research is relevant to you - Visit their website for more information: https://t.co/fOvYiWEDuE

[HDR UK Midlands @HDRMidlands]

Join us for @sheikhneuro presenting: Multimodal Data in Sports Concussion on Wed 22nd May 2024 @ 12.30pm. A free online talk hosted by @HDR_UK #Midlands. Sign up via: https://t.co/YQbEQXhot1

[HDR UK Midlands @HDRMidlands]

Registration has re-opened for our Annual @HDR_UK #Midlands conference 2024 in #Nottingham. Register now for the final few remaining places via: https://t.co/NYbHnWxRiv

[Autoimmune Chat @AutoimmuneChat]

#RareDiseaseDay is a great way to show support & raise awareness of rare diseases. I see a lot being done around rare cancers & genetic diseases but would love to see more being done for rare #autoimmune diseases. Do you agree?

[RECORDER Project @RecorderUK]

@RecorderUK are delighted to be part of the new #RareDisease network at the University of Nottingham
#RareDiseaseDay
👇
https://t.co/xv9lEzNV08

@UoNresearch @RAIRDA_org @NottmBRCMSIR

[Nottingham Research @UoNresearch]

On #RareDiseaseDay, @UniofNottingham is proud to share news of our Rare Disease Research Network, where academics and @nottmhospitals colleagues work together to improve the lives of the 3.5m people in the UK who have a rare condition.

https://t.co/E91hgDSAmq

[Rare Disease Day @rarediseaseday]

🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours

[ZoiAn @ZoiAn2]

Two days until #RareDiseaseDay
#vasculitis is a #rare #autoimmune #RareDisease
Support is essential, especially to newly diagnosed patients.
We support #RareDiseaseDay24
@vascuk @_ERNRITA

[DrFiona_Pearce @DrFiona_Pearce]

2 days to #RareDiseaseDay
@RecorderUK team are supporting #RareDiseaseDay2024 - see how here 👇
https://t.co/4EOa4dC0fb

[Michelle Willicombe @mkwillicombe]

Baseline @MELODYStudyUK now published.

>100,000 immunocompromised people with organ transplants, rare autoimmune disease or blood cancer were invited 2 take part.

COVID-Ab results after 3-5 vaccines were reported in >23,000
https://t.co/E3fMdNPbMZ

[RECORDER Project @RecorderUK]

Dr Megan Rutter of the RECORDER group was awarded the Dean Moore Scholarship Award in the University of Nottingham Tri-campus Awards, recognising students who contribute to world-leading research, and their impact on the wider university community.
https://t.co/avViVvpSny

[RECORDER Project @RecorderUK]

https://t.co/HMgRuIHDUp
Full seminar list here, first one is tomorrow- A deeper dive into the SACT data set, Wednesday 29 March 1-2pm

[RECORDER Project @RecorderUK]

https://t.co/a10lAjxrVg
Join us to hear the RECORDER team present on the Successes and challenges for non-genetic national rare disease registration, 1-2pm on 26th April 2023
#rarediseases #HealthData

[RECORDER Project @RecorderUK]

@UniofNottingham @nottmhospitals @HDR_UK @lanyon_peter @MBythell @MeganLizi @rairda @DataSavesLives_ @Societi_UK_KD @UoNresearch @NHSDigital @vascuk @ZoiAn2 @RheumJnl @jrironside @drjamesgalloway @sashali44 @UKMyositis @RAIRDA_org @MELODYStudyUK @kidneydoc101 @mkwillicombe @stephenmcadoo @DrFiona_Pearce @DrMyronOdingo @LUPUSUK @WeAreSRUK @The_MRC Data from the @MELODYStudyUK 👇

https://t.co/eeJPqfNqtu

14.1% of people with rare autoimmune rheumatic diseases #RAIRD had no detectable antibodies against #COVID19 after 3 or more #vaccine doses

More vaccine doses=better
14.5% no antibodies after 3 doses
⬇️10% after 5+ doses

[RECORDER Project @RecorderUK]

To support #RareDiseaseDay we will be tweeting throughout the day

Check out our new website 🖥️https://t.co/UDTnHSc5ap

Take a look at our news, projects and people

See how we use #HealthData to support national disease registration and enable pioneering #rarediseases research.

[RECORDER Project @RecorderUK]

@UniofNottingham @nottmhospitals @HDR_UK @lanyon_peter @MBythell @MeganLizi @rairda @DataSavesLives_ @Societi_UK_KD @UoNresearch @NHSDigital @vascuk @ZoiAn2 @RheumJnl @jrironside @drjamesgalloway @sashali44 @UKMyositis @RAIRDA_org @MELODYStudyUK @kidneydoc101 @mkwillicombe @stephenmcadoo @DrFiona_Pearce @DrMyronOdingo MELODY is studying #COVID19 vaccine responses in >6000 people with rare autoimmune rheumatic diseases #RAIRD

#Lupus = 2412 people
#Vasculitis = 1938 people
#Scleroderma= 869 people
#Myositis = 440 people

https://t.co/H2ZMSwIi36

@vascuk @LUPUSUK @WeAreSRUK @UKMyositis
@The_MRC