Author: Lynch Syndrome Ireland

Nouscom to Present Final Results from Successful Phase Ib/II Trial of NOUS-209 in People Living with Lynch Syndrome, Demonstrating Powerful Potential to Intercept Cancer in its Earliest Stages of Development

Lynch Syndrome (LS) is a common hereditary condition that significantly increases the risk of developing cancer, especially colorectal and endometrial cancers

NOUS-209 is an off-the-shelf immunotherapy designed to harness the power of the immune system to recognise and eliminate cancer before tumours develop.

Full safety and immunogenicity results from a Phase Ib/II study of NOUS-209 in LS to be presented in an oral presentation at AACR 2025

Following positive meetings with FDA, NOUS-209 clinical data support advancement to a potentially registration-enabling clinical study for cancer interception in LS

https://www.globenewswire.com/news-release/2025/3/25/3049177/0/en/Nouscom-to-Present-Final-Results-from-Successful-Phase-Ib-II-Trial-of-NOUS-209-in-People-Living-with-Lynch-Syndrome-Demonstrating-Powerful-Potential-to-Intercept-Cancer-in-its-Earl.html

Lynch Syndrome Cancer Prevention Vaccine: What is the Latest? Dana- Farber Cancer Institute

Dana-Farber researchers are running a clinical trial testing a cancer vaccine that trains the immune system to very specifically recognize the kinds of cancer cells that are likely to develop in people with Lynch syndrome — and eradicate them before they develop into cancer. 

Lynch Syndrome Cancer Prevention Vaccine: What is the Latest? 

New report : How can we improve the experience for people who need to be screened for Lynch syndrome?-NHS

Recommendations:

Training for GPs & oncologists in Lynch syndrome needs to be a priority. 
Improved communication between services about the Lynch syndrome pathway 
Taking a person-centred approach to Lynch syndrome 
Every patient should have a named contact in a mainstreamed clinic 
All clinicians providing mainstreamed clinics should have access to appropriate guidance. This knowledge can then be shared with patients at the point of care 
Reduce pathway variation and ensure geographical equity of care. 
Dedicated, specialist clinicians trained in Lynch syndrome mainstreaming should be provided for all patients 
Standardised patient information should be created and utilised across all regions and NHS providers 
Lynch Syndrome App should be widely promoted among healthcare providers to help increase awareness of the condition. 
Everyone diagnosed with Lynch Syndrome should be given information about Lynch Syndrome UK 
Standardised information about ‘Living with Lynch’, talking to relatives, family planning, and mental health support should be created. 
New processes around cascade testing should be considered to improve support and information provided for the patient and their families. 
Consider concerns of/about family members 
Regular, clear and consistent communication for patients whilst awaiting appointments or results is necessary. 
Increased psychological support 
Training given to all clinicians (not just those working with Lynch) about gender inclusivity and how to ensure that patients feel welcomed and respected within any NHS service.

https://southeastgenomics.nhs.uk/new-report-how-can-we-improve-the-experience-for-people-who-need-to-be-screened-for-lynch-syndrome/

National Screening Service

Annual report available at…

https://www2.healthservice.hse.ie/organisation/nss/news/operational-excellence-quality-central-to-strategy-implementation-at-nss/

Lots of lovely words and Pics…unfortunately uptake of Free Bowel screen is still very low…why?

Genetics V Genomics

Difference between Coding and Noncoding DNA
Coding DNA Noncoding DNA 
They have a DNA sequence to encode for proteins.These DNA sequences do not encode for protein.
The coding sequence has exons.It has regulatory elements, introns, repeating sequences, pseudogenes, and telomeres.
They are approximately 1% of our total genome.They form around 99% of our genome.
They encode proteins that have regulatory, structural, as well as functional importance.They control and regulate gene activity.

Lynch Choices

  • Lynch syndrome is an inherited condition that increases the chance of developing certain cancers. The type of cancer depends on the genes involved.
  • This website helps people with Lynch to make choices that are right for them. It is designed to be used with support from the genetics service, GPs, healthcare teams in the community, charities and patient groups.
  • If you are concerned about Lynch but have not been diagnosed, please speak to your GP or genetics service.
  • You’ll find two sections which help you think about your choices at home, so you are ready to talk through these choices with a GP, genetics or other specialist.
  • There are also another six sections providing support and information for people with Lynch. These sections may also be useful to family members and healthcare professionals of people with Lynch.

https://lynchsyndromeireland.wordpress.com/wp-admin/post-new.php

15 Years in Cancer Research: A Journey of Curiosity, Resilience and Collaboration

I have also learnt along the way that people have very different opinions about how to do research, what is important and not, and how you should spend your time at work and outside the working hours. My advice is to find your inner voice and stay faithful to your values and goals. Listen and learn by your colleagues, friends and family, but don’t let others decide what is right for you

15 Years in Cancer Research: A Journey of Curiosity, Resilience and Collaboration
15 Years in Cancer Research: A Journey of Curiosity, Resilience and Collaboration
15 Years in Cancer Research: A Journey of Curiosity, Resilience and Collaboration

Access to New Drugs….

Matt Cooper the Last word. Miriam Staunton Talks about UCAN Ireland launch and problems around access to New Drugs. Listen back here

https://www.goloudplayer.com/episodes/access-to-new-drugs-most-pressin-MDA3YjQ0ZjY4ZTdjNGY1MDMxMDlhMGJmZjk2OTgyMDM=

UCAN

Launched today outside Leinster House.

https://www.facebook.com/reel/1009053707324898

Digitisation of health service will be clinician-led – HSE Deputy CEO 

The EU has set a deadline of 2030 for Member States to have EHRs accessible to all citizens.

“This is a big project, certainly €2 billion to €3 billion over 10 years. This is not a small investment. It’s very significant. That’s not just the product. That’s all of the staff, all of the change,” he said. “If we don’t make the investment and take some pain, we won’t get the return at a later point.”

…..About time.

Digitisation of health service will be clinician-led – HSE Deputy CEO