National and International Skin Registry Solutions CLG
Joined December 2020
- Tweets 145
- Following 127
- Followers 54
- Likes 178
11 Photos and videos
Pinned Tweet
12 Sep 2023
We are all proud to be part of this collaboration to advance patient registries in Ireland!
Today, HRCI & our collaborators NISR & CFRI publish ๐๐ง๐ฅ๐จ๐๐ค๐ข๐ง๐ ๐ญ๐ก๐ ๐๐จ๐ญ๐๐ง๐ญ๐ข๐๐ฅ ๐จ๐ ๐๐๐ญ๐ข๐๐ง๐ญ ๐๐๐ ๐ข๐ฌ๐ญ๐ซ๐ข๐๐ฌ: ๐ ๐๐ฎ๐ข๐๐ ๐๐จ๐ซ ๐๐ฎ๐๐๐๐ฌ๐ฌ. It lays out practical advice on developing & sustaining a patient registry. bit.ly/RegGuide2023
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10 Sep 2024
Weโre 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/
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4 Sep 2024
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/
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As part of implementing the EU Health Data Space, @HIQA @roinnslainte @HSELive @hrbireland are creating a Public/Patient Involvement Panel on โCollecting, using, sharing health information for better services, policy, research & innovationโ Details here: bit.ly/3yq176B
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NISR Solutions retweeted
5 Aug 2021
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
20 Jul 2021
The EB Registry will allow us to monitor the safety and effectiveness of EB treatments, as well as many other benefits seen in the video below ๐ To register call the EB Clinic @CHIatCrumlin on 01- 428 2646. #teameffort #healthresearchmatters #EB @SkinRegs
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26 Apr 2024
Last years fantastic guide on Unlocking the Potential of Patient Registries, read it here:
Today, HRCI & our collaborators NISR & CFRI publish ๐๐ง๐ฅ๐จ๐๐ค๐ข๐ง๐ ๐ญ๐ก๐ ๐๐จ๐ญ๐๐ง๐ญ๐ข๐๐ฅ ๐จ๐ ๐๐๐ญ๐ข๐๐ง๐ญ ๐๐๐ ๐ข๐ฌ๐ญ๐ซ๐ข๐๐ฌ: ๐ ๐๐ฎ๐ข๐๐ ๐๐จ๐ซ ๐๐ฎ๐๐๐๐ฌ๐ฌ. It lays out practical advice on developing & sustaining a patient registry. bit.ly/RegGuide2023
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NISR Solutions retweeted
17 Apr 2024
This is absolutely wonderful! A huge thank you from all the GRASS communities! @BSFcharity @AlopeciaUK
@SinclairDerm @StaraceMichela @Desaze @SergioVanoG @Lidia_Rudnicka @NekiMeah
@SkinRegs
15 Apr 2024
Starting the week off with a win: weโre funding research into Alopecia Areata alongside @alopeciauk ๐๐ผ
Want to find out more? Click here: britishskinfoundation.org.ukโฆ
#BritishSkinFoundation #AlopeciaUK #Alopecia #AlopeciaAreata #AlopeciaAwareness #GrassUK #SkinConditions
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NISR Solutions retweeted
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-irelanโฆ #HealthResearchMatters
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2 Apr 2024
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
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NISR Solutions retweeted
1 Apr 2024
April isย #RosaceaAwarenessMonthย -ย #rosacea is a commonย #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:ย bit.ly/2PjZo85
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NISR Solutions retweeted
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 โ 2026 Strategic Plan ncri.ie/sites/ncri/files/pubโฆ
@hseNCCP @NSShse @BreakthroCancer @cancertrials_ie
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NISR Solutions retweeted
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 โ 2026 Strategic Plan ncri.ie/sites/ncri/files/pubโฆ
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NISR Solutions retweeted
4 Mar 2024
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
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NISR Solutions retweeted
28 Feb 2024
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!
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NISR Solutions retweeted
15 Feb 2024
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.16007
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
โฉ Read more articles published in #Allergy on #atopicdermatitis here: journalallergy.com/Atopic_Deโฆ
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NISR Solutions retweeted
16 Feb 2024
~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/
14 Feb 2024
Itโs estimated that around 6% of the population or 300,000 people in Ireland are living with a rare disease.
The new National Rare Disease Plan will set out the vision for rare disease services in Ireland.
gov.ie/en/press-release/6b8eโฆ
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NISR Solutions retweeted
15 Feb 2024
Listen back to @CRdermatology as she discusses different types of #hairloss and ways to treat it with @PatKennyNT #alopecia #alopeciaawareness link.goloudplayer.com/s/pGZjโฆ
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16 Feb 2024
A New Consensus on Assessing Alopecia dermatologytimes.com/view/a-โฆ via @Dermatology Times
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NISR Solutions retweeted
15 Feb 2024
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-โฆ
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NISR Solutions retweeted
15 Feb 2024
Thanks @DermTimesNow for summarising and sharing our @JAMADerm article (jamanetwork.com/journals/jamโฆ)
#alopeciaareata #alopecia #ASAMI
15 Feb 2024
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-โฆ
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