RECORDER Project

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: tinyurl.com/RareDiseaseEmp… Your voice can drive change #RareDisease

If you live in the UK and have a rare condition, please take part and share. Together, we can drive better support at work. 🔗 forms.office.com/e/dwgBKrBPYh #RareDisease #WorkAndHealth

📢 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.

📢 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: hubs.li/Q02XsMkh0

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👇 understandingpatientdata.org.uk/public-attitud…

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: shorturl.at/acuCS

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: hdrmidlands.org.uk/data-grand-rou…

Registration has re-opened for our Annual @HDR_UK #Midlands conference 2024 in #Nottingham. Register now for the final few remaining places via: hdrmidlands.org.uk

#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?

@RecorderUK are delighted to be part of the new #RareDisease network at the University of Nottingham #RareDiseaseDay 👇 nottingham.ac.uk/research/group… @UoNresearch @RAIRDA_org @NottmBRCMSIR

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. bit.ly/3URR7M7

🚨 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

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

2 days to #RareDiseaseDay @RecorderUK team are supporting #RareDiseaseDay2024 - see how here 👇 nottingham.ac.uk/research/group…

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 sciencedirect.com/science/articl…

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. nottingham.ac.uk/research/group…

digital.nhs.uk/ndrs/news/even… Full seminar list here, first one is tomorrow- A deeper dive into the SACT data set, Wednesday 29 March 1-2pm

eventbrite.co.uk/e/successes-an… 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

@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 👇 doi.org/10.1101/2023.0… 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

@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 nottingham.ac.uk/news/melody-st… @vascuk @LUPUSUK @WeAreSRUK @UKMyositis @The_MRC

To support #RareDiseaseDay we will be tweeting throughout the day Check out our new website 🖥️shorturl.at/bhuXY Take a look at our news, projects and people See how we use #HealthData to support national disease registration and enable pioneering #rarediseases research.