NISR Solutions

We are all proud to be part of this collaboration to advance patient registries in Ireland!

We’re excited to announce our first Annual Report will be published soon. Visit our website and subscribe to our mailing list to be among the first to receive it. nisrsolutions.com

We're thrilled to announce our first Annual Report will be released soon. Visit our website and subscribe to our mailing list be among the first to receive it. nisrsolutions.com

As part of implementing the EU Health Data Space, @HIQA @roinnslainte @HSELive @hrbireland are creating a Public/Patient Involvement Panel on “Collecting, using, sharing health information for better services, policy, research & innovation” Details here: bit.ly/3yq176B

The Irish EB registry is open and looking for participants, check out this great video to learn more. To register please call @CHIatCrumlin on 01-428 2646 #healthresearchmatters #EB

Last years fantastic guide on Unlocking the Potential of Patient Registries, read it here:

This is absolutely wonderful! A huge thank you from all the GRASS communities! @BSFcharity @AlopeciaUK @SinclairDerm @StaraceMichela @Desaze @SergioVanoG @Lidia_Rudnicka @NekiMeah @SkinRegs

Exciting news! We've just launched the Report & Recommendations from the Nov 2023 Irish Health Research Forum, delving into the future of biobanking in Ireland. Find the report and one page snapshot here hrci.ie/biobanking-in-… #HealthResearchMatters

Are you a researcher interested in #EB, #Alopecia, or #Eczema? CONTACT US to learn more about how OUR IRISH PATIENT REGISTRIES support research!

Are you a researcher interested in #EB, #Alopecia, or #Eczema? Contact us to learn more about how our Irish patient registries support research! #Skin #registries

April is #RosaceaAwarenessMonth - #rosacea is a common #skincondition, which mainly affects facial skin. It's most often seen in people who've fair skin & often referred to as the 'Curse of the Celts'. For more, check out our rosacea information page at: bit.ly/2PjZo85

Thank you to all our partners, stakeholders and colleagues for joining us yesterday to mark #30YearsOfData collection, and to celebrate the launch of our 2024 – 2026 Strategic Plan ncri.ie/sites/ncri/fil… @hseNCCP @NSShse @BreakthroCancer @cancertrials_ie

This year we celebrate #30YearsOfData collection, a significant milestone in Ireland's efforts to fight cancer. Minister for Health @DonnellyStephen marked the occasion by launching the @IrishCancerReg 2024 – 2026 Strategic Plan ncri.ie/sites/ncri/fil…

At the launch of the new @IrishCancerReg strategy, @DonnellyStephen talks about the value of registry data to improve services and how the cancer registry shines internationally. #HealthResearchMatters

It's #RareDiseaseDay tomorrow - a day to think about all of those living with rare diseases. Their families and loved ones. Those caring for them. We have one simple ask - EQUITY!

Open Access: Impact of climate change on atopic dermatitis: A review by the International Eczema Council. First author: Sheng-Pei Wang; corresponding author: Katrina Abuabara Read the article for free here: doi.org/10.1111/all.16… Extreme weather events caused by climate change and #airpollution are having a detrimental impact on our health, including atopic #dermatitis (AD). Wang et al. reviewed studies on the effect of climatic hazards on AD. #Allergy_journal @CouncilEczema ⁩ Read more articles published in #Allergy on #atopicdermatitis here: journalallergy.com/Atopic_Dermati…

~50 people joined first meeting of Rare Disease Patient Forum. Group will feed into development of new National Rare Disease Strategy. Clear there is considerable interest amongst those living with rare diseases in this work. You can still join the group rdi.ie/rd-strategy/

Listen back to @CRdermatology as she discusses different types of #hairloss and ways to treat it with @PatKennyNT #alopecia #alopeciaawareness link.goloudplayer.com/s/pGZjWeRqRhU0

A New Consensus on Assessing Alopecia dermatologytimes.com/view/a-new-con… via @Dermatology Times

A consensus statement recently published, the Alopecia Areata Severity and Morbidity Index Study, identified several key factors associated with AA severity independent of scalp hair loss in an effort to develop a new tool to quantify effects on patients. dermatologytimes.com/view/a-new-con…

Thanks @DermTimesNow for summarising and sharing our @JAMADerm article (jamanetwork.com/journals/jamad…) #alopeciaareata #alopecia #ASAMI