Rare Disease Clinical Trial Network
@rarediseasectn.bsky.social
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
Huge congrats to our partners at @hrci.bsky.social!
We were delighted to attend the Irish Health Research Forum workshop, "It's Time to Speak Up for Health Research."
Inspiring discussion on how the research community can speak with a stronger, united voice to policymakers & the public!
We were delighted to attend the Irish Health Research Forum workshop, "It's Time to Speak Up for Health Research."
Inspiring discussion on how the research community can speak with a stronger, united voice to policymakers & the public!
November 21, 2025 at 3:31 PM
Huge congrats to our partners at @hrci.bsky.social!
We were delighted to attend the Irish Health Research Forum workshop, "It's Time to Speak Up for Health Research."
Inspiring discussion on how the research community can speak with a stronger, united voice to policymakers & the public!
We were delighted to attend the Irish Health Research Forum workshop, "It's Time to Speak Up for Health Research."
Inspiring discussion on how the research community can speak with a stronger, united voice to policymakers & the public!
⏰ The clock is ticking! Don't forget, the deadline for our Seed Funding is this coming Monday, Nov 25th.
Are you an emerging & early-career researcher looking to build data for a new Rare Disease intervention or trial? This is for you!
Apply: rarediseaseresearch....
Are you an emerging & early-career researcher looking to build data for a new Rare Disease intervention or trial? This is for you!
Apply: rarediseaseresearch....
November 20, 2025 at 11:17 AM
⏰ The clock is ticking! Don't forget, the deadline for our Seed Funding is this coming Monday, Nov 25th.
Are you an emerging & early-career researcher looking to build data for a new Rare Disease intervention or trial? This is for you!
Apply: rarediseaseresearch....
Are you an emerging & early-career researcher looking to build data for a new Rare Disease intervention or trial? This is for you!
Apply: rarediseaseresearch....
Our Network Manager Suzanne McCormack was delighted to represent RDCTN at the 49th Irish Endocrine Society Annual Meeting last week.
Huge thanks to the IES committee for inviting us and for organising such an excellent meeting!
Huge thanks to the IES committee for inviting us and for organising such an excellent meeting!
November 18, 2025 at 9:34 AM
Our Network Manager Suzanne McCormack was delighted to represent RDCTN at the 49th Irish Endocrine Society Annual Meeting last week.
Huge thanks to the IES committee for inviting us and for organising such an excellent meeting!
Huge thanks to the IES committee for inviting us and for organising such an excellent meeting!
⏳ Just one week to go! The deadline for our Seed Funding Application is next Monday, Nov 24th.
This is a fantastic opportunity to support early-career research. We're passionate about #PPI, so tell us your plans for collaboration!
Learn more & apply: rarediseaseresearch....
This is a fantastic opportunity to support early-career research. We're passionate about #PPI, so tell us your plans for collaboration!
Learn more & apply: rarediseaseresearch....
November 17, 2025 at 11:14 AM
⏳ Just one week to go! The deadline for our Seed Funding Application is next Monday, Nov 24th.
This is a fantastic opportunity to support early-career research. We're passionate about #PPI, so tell us your plans for collaboration!
Learn more & apply: rarediseaseresearch....
This is a fantastic opportunity to support early-career research. We're passionate about #PPI, so tell us your plans for collaboration!
Learn more & apply: rarediseaseresearch....
Reposted by Rare Disease Clinical Trial Network
A #MethodologyMonday - Raven-Gregg & Shepherd on how methodology studies on attitudes to deferred consent often poorly represent ethnic minority groups. They argue for more equitable research, we need better reporting & greater diversity in research teams & ethics committees.
doi.org/10.1186/s130...
doi.org/10.1186/s130...
Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations’ views on deferred consent - Trials
Background Deferred consent is used to recruit patients in emergency research, when informed consent cannot be obtained prior to enrolment. This model of consent allows studies to recruit larger numbe...
doi.org
October 20, 2025 at 7:46 AM
A #MethodologyMonday - Raven-Gregg & Shepherd on how methodology studies on attitudes to deferred consent often poorly represent ethnic minority groups. They argue for more equitable research, we need better reporting & greater diversity in research teams & ethics committees.
doi.org/10.1186/s130...
doi.org/10.1186/s130...
We were delighted to attend the 9th Trials Methodology Symposium - thanks to @hrb-tmrn.bsky.social, @ucc.ie, @sensitise-eu.bsky.social for organising a wonderful program.
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
November 17, 2025 at 8:43 AM
We were delighted to attend the 9th Trials Methodology Symposium - thanks to @hrb-tmrn.bsky.social, @ucc.ie, @sensitise-eu.bsky.social for organising a wonderful program.
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
Also great to catch up with colleagues in @in4kids.bsky.social and Breakthrough Cancer Research!
Excited for our PPI Liaison Officer to deliver an upcoming talk on #PPI and research impact at UCD for the Conway Lecture & Seminar Series (CLASS). Fantastic to see so much interest from early-career researchers who are keen to expand their skills and build strong partnerships!
November 12, 2025 at 1:32 PM
Excited for our PPI Liaison Officer to deliver an upcoming talk on #PPI and research impact at UCD for the Conway Lecture & Seminar Series (CLASS). Fantastic to see so much interest from early-career researchers who are keen to expand their skills and build strong partnerships!
Reposted by Rare Disease Clinical Trial Network
What would you like to see in Spectrum in 2026!
We are currently planning content for the quarterly members magazine and want to know what YOU would like to read.
Let us know confidentially here: www.cfireland.ie/about-cf/lat...
We are currently planning content for the quarterly members magazine and want to know what YOU would like to read.
Let us know confidentially here: www.cfireland.ie/about-cf/lat...
November 11, 2025 at 7:09 PM
What would you like to see in Spectrum in 2026!
We are currently planning content for the quarterly members magazine and want to know what YOU would like to read.
Let us know confidentially here: www.cfireland.ie/about-cf/lat...
We are currently planning content for the quarterly members magazine and want to know what YOU would like to read.
Let us know confidentially here: www.cfireland.ie/about-cf/lat...
Reposted by Rare Disease Clinical Trial Network
We were delighted to participate in last month's National PPI Festival by hosting a 'Lunch & Learn' webinar spotlighting the In4kids/CHI National Young Persons Advisory Group.
Thanks to all attendees for the thoughtful discussions & contributions throughout the session!
Missed it? bit.ly/47YQeY0
Thanks to all attendees for the thoughtful discussions & contributions throughout the session!
Missed it? bit.ly/47YQeY0
Inside a YPAG Lunch & Learn Webinar on Youth Involvement 20251013
bit.ly
November 5, 2025 at 4:17 PM
We were delighted to participate in last month's National PPI Festival by hosting a 'Lunch & Learn' webinar spotlighting the In4kids/CHI National Young Persons Advisory Group.
Thanks to all attendees for the thoughtful discussions & contributions throughout the session!
Missed it? bit.ly/47YQeY0
Thanks to all attendees for the thoughtful discussions & contributions throughout the session!
Missed it? bit.ly/47YQeY0
Reposted by Rare Disease Clinical Trial Network
1️⃣ day to go until Science Week 2025 is here!
Here are just SOME of the many incredible events taking place across the country from 9th - 16th November.
Visit scienceweek.ie to find a #ScienceWeek event near you!
#ThenTodayTomorrow
Here are just SOME of the many incredible events taking place across the country from 9th - 16th November.
Visit scienceweek.ie to find a #ScienceWeek event near you!
#ThenTodayTomorrow
November 8, 2025 at 12:41 PM
1️⃣ day to go until Science Week 2025 is here!
Here are just SOME of the many incredible events taking place across the country from 9th - 16th November.
Visit scienceweek.ie to find a #ScienceWeek event near you!
#ThenTodayTomorrow
Here are just SOME of the many incredible events taking place across the country from 9th - 16th November.
Visit scienceweek.ie to find a #ScienceWeek event near you!
#ThenTodayTomorrow
Reflecting on the powerful insights and community spirit from our conference in April. www.youtube.com/watc...
We've been busy planning and are thrilled to announce... we're doing it again!
✨ SAVE THE DATE ✨
Our next Rare Disease Research Conference is set for 5th Nov 2026.
We've been busy planning and are thrilled to announce... we're doing it again!
✨ SAVE THE DATE ✨
Our next Rare Disease Research Conference is set for 5th Nov 2026.
Rare Disease Research Conference 2025 - Reflections
Stakeholder perspectives on the Rare Disease Research Conference held 10th April, 2025.
www.youtube.com
November 10, 2025 at 1:25 PM
Reflecting on the powerful insights and community spirit from our conference in April. www.youtube.com/watc...
We've been busy planning and are thrilled to announce... we're doing it again!
✨ SAVE THE DATE ✨
Our next Rare Disease Research Conference is set for 5th Nov 2026.
We've been busy planning and are thrilled to announce... we're doing it again!
✨ SAVE THE DATE ✨
Our next Rare Disease Research Conference is set for 5th Nov 2026.
Hurry! In less than 3 weeks, our Seed Funding Application is due!
This is a great chance for ECRs to build pilot data for an intervention or trial. We encourage all applicants to have meaningful collaborations with PPI partners in the proposed research.
This is a great chance for ECRs to build pilot data for an intervention or trial. We encourage all applicants to have meaningful collaborations with PPI partners in the proposed research.
Seed Funding - Rare Disease Clinical Trial Network
Print Envelope Share-alt Seed Fund for Emerging and Early Career Researchers SEED FUND 2025 Aimed at supporting emerging and early career researchers to build pilot data aimed at developing an intervention and/or preparing for a clinical trial. We are committed to keeping the patient voice at the heart of our work and encourage applicants to...
rarediseaseresearch.ie
November 6, 2025 at 1:21 PM
Hurry! In less than 3 weeks, our Seed Funding Application is due!
This is a great chance for ECRs to build pilot data for an intervention or trial. We encourage all applicants to have meaningful collaborations with PPI partners in the proposed research.
This is a great chance for ECRs to build pilot data for an intervention or trial. We encourage all applicants to have meaningful collaborations with PPI partners in the proposed research.
Reposted by Rare Disease Clinical Trial Network
We’re building a community.
FOLLOW US to be part of this growing movement; help make research more connected & inclusive
🔗 LinkedIn: ENGAGED – Open Research & Public Engagement Roadmap 🔗 Bluesky: @engagedroadmap.bsky.social
@researchireland.ie
#ScienceWeek #OpenResearch #PublicEngagement
FOLLOW US to be part of this growing movement; help make research more connected & inclusive
🔗 LinkedIn: ENGAGED – Open Research & Public Engagement Roadmap 🔗 Bluesky: @engagedroadmap.bsky.social
@researchireland.ie
#ScienceWeek #OpenResearch #PublicEngagement
November 5, 2025 at 11:10 AM
We’re building a community.
FOLLOW US to be part of this growing movement; help make research more connected & inclusive
🔗 LinkedIn: ENGAGED – Open Research & Public Engagement Roadmap 🔗 Bluesky: @engagedroadmap.bsky.social
@researchireland.ie
#ScienceWeek #OpenResearch #PublicEngagement
FOLLOW US to be part of this growing movement; help make research more connected & inclusive
🔗 LinkedIn: ENGAGED – Open Research & Public Engagement Roadmap 🔗 Bluesky: @engagedroadmap.bsky.social
@researchireland.ie
#ScienceWeek #OpenResearch #PublicEngagement
Reposted by Rare Disease Clinical Trial Network
Attend our joint seminar with @ucdresearch.bsky.social:
Engagement for Research Impact
12th November
2.30pm
Link 3, James Joyce Library
This session will help you understand the complex area of research impact, incl. how to measure your impact within academia & more.
Register👉 bit.ly/engage1211
Engagement for Research Impact
12th November
2.30pm
Link 3, James Joyce Library
This session will help you understand the complex area of research impact, incl. how to measure your impact within academia & more.
Register👉 bit.ly/engage1211
November 3, 2025 at 3:38 PM
Attend our joint seminar with @ucdresearch.bsky.social:
Engagement for Research Impact
12th November
2.30pm
Link 3, James Joyce Library
This session will help you understand the complex area of research impact, incl. how to measure your impact within academia & more.
Register👉 bit.ly/engage1211
Engagement for Research Impact
12th November
2.30pm
Link 3, James Joyce Library
This session will help you understand the complex area of research impact, incl. how to measure your impact within academia & more.
Register👉 bit.ly/engage1211
A big shout-out to our friends HRCI! They're hosting the Irish Health Research Forum in Nov/Dec. This crucial event brings all stakeholders together to shape Irish health research. Highly recommend!
Are you interested in keeping up to date with the work of HRCI? Our next newsletter will be published shortly- sign up to our mailing list to make sure you receive news, Irish Health Research Forum invitations and links to our latest publications. http://eepurl.com/gF...
November 4, 2025 at 1:36 PM
A big shout-out to our friends HRCI! They're hosting the Irish Health Research Forum in Nov/Dec. This crucial event brings all stakeholders together to shape Irish health research. Highly recommend!
We were delighted to be at the ERDERA 2nd General Assembly in Amsterdam! It's wonderful to join our colleagues from HRCI. Together, we're supporting the vital PPIE work package, aimed at enabling rare disease research across Europe. Collaboration at its best!
November 4, 2025 at 12:56 PM
We were delighted to be at the ERDERA 2nd General Assembly in Amsterdam! It's wonderful to join our colleagues from HRCI. Together, we're supporting the vital PPIE work package, aimed at enabling rare disease research across Europe. Collaboration at its best!
Big congrats to our UCD colleague, Keith Smart! 👏
His work on improving clinical trials for Complex Regional Pain Syndrome was featured by Realise D at the WODC in Amsterdam. A crucial step forward for research into this condition.
Read the paper here: journals.lww.com/pai...
His work on improving clinical trials for Complex Regional Pain Syndrome was featured by Realise D at the WODC in Amsterdam. A crucial step forward for research into this condition.
Read the paper here: journals.lww.com/pai...
November 3, 2025 at 12:39 PM
Big congrats to our UCD colleague, Keith Smart! 👏
His work on improving clinical trials for Complex Regional Pain Syndrome was featured by Realise D at the WODC in Amsterdam. A crucial step forward for research into this condition.
Read the paper here: journals.lww.com/pai...
His work on improving clinical trials for Complex Regional Pain Syndrome was featured by Realise D at the WODC in Amsterdam. A crucial step forward for research into this condition.
Read the paper here: journals.lww.com/pai...
Reposted by Rare Disease Clinical Trial Network
🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch!
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
October 30, 2025 at 2:18 PM
🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch!
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
An inspiring couple of days at the Orphan Drug World Congress hearing about successes, solutions and new innovations in rare disease care, research and therapy development. Great to see patient centricity as a central theme. Catching up with our colleagues was a bonus!
October 30, 2025 at 9:41 AM
An inspiring couple of days at the Orphan Drug World Congress hearing about successes, solutions and new innovations in rare disease care, research and therapy development. Great to see patient centricity as a central theme. Catching up with our colleagues was a bonus!
Reposted by Rare Disease Clinical Trial Network
A full room at Leinster House this morning as TDs & Senators hear first-hand the urgent need for better EB care in Ireland.
#EB #butterflyskin #butterflyreview #EBAwarenessWeek
#EB #butterflyskin #butterflyreview #EBAwarenessWeek
October 22, 2025 at 2:08 PM
A full room at Leinster House this morning as TDs & Senators hear first-hand the urgent need for better EB care in Ireland.
#EB #butterflyskin #butterflyreview #EBAwarenessWeek
#EB #butterflyskin #butterflyreview #EBAwarenessWeek
Reposted by Rare Disease Clinical Trial Network
www.nature.com/articles/s41...
🧪🧪 4 years of hard graft. Thanks to all our collaborators.
🧪🧪 4 years of hard graft. Thanks to all our collaborators.
What is risk in clinical genetics? Designing and piloting tools to evaluate risk in clinical genetics using failure modes and effects analysis - European Journal of Human Genetics
European Journal of Human Genetics - What is risk in clinical genetics? Designing and piloting tools to evaluate risk in clinical genetics using failure modes and effects analysis
www.nature.com
October 27, 2025 at 11:52 AM
www.nature.com/articles/s41...
🧪🧪 4 years of hard graft. Thanks to all our collaborators.
🧪🧪 4 years of hard graft. Thanks to all our collaborators.
Reposted by Rare Disease Clinical Trial Network
Webinar 14th October 17hrs CEST. TOPIC: Unique populations of Europe. The Finnish (Outi), the Roma in Romania (Ioana) & Irish Travellers (me). Tomas de Jong from the EPHA will talk about the EU's role in smoothing out health inequities. ern-ithaca.eu/events-news/...
ERN-ITHACA WEBINAR: GENETICS AND UNIQUE POPULATIONS: THE CASE OF THE FINNISH, ROMA & IRISH TRAVELLERS - ERN ITHACA
Europe is made up of many different populations both indigenous to Europe and those that migrated in over the centuries. Differing barriers in healthcare access means that rare and ultra rare disorder...
ern-ithaca.eu
October 9, 2025 at 4:35 PM
Webinar 14th October 17hrs CEST. TOPIC: Unique populations of Europe. The Finnish (Outi), the Roma in Romania (Ioana) & Irish Travellers (me). Tomas de Jong from the EPHA will talk about the EU's role in smoothing out health inequities. ern-ithaca.eu/events-news/...
Reposted by Rare Disease Clinical Trial Network
The countdown to Science Week 2025 is on 🔬🗓️
Supported by Research Ireland, Science Week is marking its 30th anniversary this year!
Festival and event details are coming soon! Stay tuned and keep an eye on www.scienceweek.ie for the latest updates.
#ScienceWeek #ThenTodayTomorrow
Supported by Research Ireland, Science Week is marking its 30th anniversary this year!
Festival and event details are coming soon! Stay tuned and keep an eye on www.scienceweek.ie for the latest updates.
#ScienceWeek #ThenTodayTomorrow
October 13, 2025 at 12:51 PM
The countdown to Science Week 2025 is on 🔬🗓️
Supported by Research Ireland, Science Week is marking its 30th anniversary this year!
Festival and event details are coming soon! Stay tuned and keep an eye on www.scienceweek.ie for the latest updates.
#ScienceWeek #ThenTodayTomorrow
Supported by Research Ireland, Science Week is marking its 30th anniversary this year!
Festival and event details are coming soon! Stay tuned and keep an eye on www.scienceweek.ie for the latest updates.
#ScienceWeek #ThenTodayTomorrow
Ready, set, RESEARCH! Our seed funding call for early-career researchers is OPEN!
We're looking for pilot projects for new interventions & clinical trials.
⏰ Deadline is next month! Have you started your application yet?
Apply now: rarediseaseresearch....
We're looking for pilot projects for new interventions & clinical trials.
⏰ Deadline is next month! Have you started your application yet?
Apply now: rarediseaseresearch....
October 16, 2025 at 11:55 AM
Ready, set, RESEARCH! Our seed funding call for early-career researchers is OPEN!
We're looking for pilot projects for new interventions & clinical trials.
⏰ Deadline is next month! Have you started your application yet?
Apply now: rarediseaseresearch....
We're looking for pilot projects for new interventions & clinical trials.
⏰ Deadline is next month! Have you started your application yet?
Apply now: rarediseaseresearch....
Time for a Clinical Trial Spotlight! We're excited to share another rare disease study happening right here in Ireland. Congrats to the brilliant teams driving this vital work forward and the patients taking part. See other trials at: rarediseaseresearch....
October 14, 2025 at 11:32 AM
Time for a Clinical Trial Spotlight! We're excited to share another rare disease study happening right here in Ireland. Congrats to the brilliant teams driving this vital work forward and the patients taking part. See other trials at: rarediseaseresearch....