Category: Uncategorized

What is the Lynch syndrome registry? (UK)

Lynch syndrome can run in families. It increases your risk of being diagnosed with bowel cancer, as well as other cancers including endometrial (womb), ovarian, stomach, bladder, kidney, and skin cancers. This condition is diagnosed by having a genetic test.

The Lynch syndrome registry records and analyses important information about people with Lynch syndrome. This helps to understand how people with Lynch syndrome are looked after and cared for across England. All information is held on a secure and confidential computer database.

Why have a Lynch syndrome registry? 

The focus of the Lynch syndrome registry is to address the differences in access, quality and timeliness of regular check-ups that people with Lynch syndrome in England currently experience.

The registry will collect information from people with Lynch syndrome and help us to better understand how these people are currently being monitored and managed. 

https://www.40tude.org.uk/news/kevin-monahan-award-25

https://lynchregistry.org.uk/#:~:text=The%20Lynch%20syndrome%20registry%20records,secure%20and%20confidential%20computer%20database.

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

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

Colon Cancer: Understanding Peripheral Neuropathy

If you’ve received chemotherapy as part of your colon cancer treatment, one of the side effects you may experience is numbness and tingling in you extremities, also known as peripheral neuropathy.

What Is Peripheral Neuropathy?

Numbness and tingling of your extremities (hands and feet) is called peripheral neuropathy. This condition is associated with several causes, including chemotherapy to cancer treatment, and involves damage to the nerves between the extremities and the central nervous system.

Recovery from peripheral neuropathy is usually slow, but steps can be taken to encourage regeneration of the damaged nerves. Some approaches include acupuncture, massage, physical therapy, and transcutaneous nerve stimulation.

https://news.cancerconnect.com/cervical-cancer/colon-cancer-understanding-peripheral-neuropathy

Why Are Colorectal Cancer Patients Getting Younger?

Increasing numbers of younger patients are being diagnosed with late-stage colorectal cancer.

What are the Epidemiological factors behind it, the age groups being affected, symptoms people should be paying attention to, preventative screening options, and where the research is going to try to reverse this alarming trend?

“I know this is an uncomfortable conversation for some, but it’s really important, and if there’s any question about whether polyps were removed and whether they’re the advanced kind or not … take photos to show those to your doctor,” Patel said. “Because patients with a family history of advanced polyps qualify for screening earlier and more frequently.”

https://news.cuanschutz.edu/news-stories/why-are-colorectal-cancer-patients-getting-younger

More than ‘just’ a GP

Research has shown that junior doctors are exposed to significant negative discourse around general practice as a specialty during their hospital-based training. The blaming of GPs for emergency department crowding is almost as inevitable as brand-new Health Ministers blaming consultants for the failings of the entire HSE (brand-new Health Ministers don’t tend to blame GPs for anything; they just forget we exist).

Perhaps we need to change the hashtag to #JustaHuman.

More than ‘just’ a GP

New Approaches to Hereditary Cancer Risk Assessment in Lynch Syndrome and Beyond

Case Conference, during which Matt Yurgelun, MD (@MattYurgelun) from @DanaFarber discusses new approaches to hereditary colorectal cancer risk assessment.

Are physicians losing public trust?

“It’s become clear to me that we as physicians and a healthcare system have lost the trust of the public, and I think it’s time we talk openly about what we as a medical community can do to gain it back.”

What physicians say publicly to and about their patients is important to preserving the public’s need to maintain that trust.

If doctors truly don’t want their patients to seek health information online, they need to do this: create a prescription pad-like  list of credible online health resource links that they will feel comfortable sharing with every patient.

“Patients have every right to be suspicious of a system so dysfunctional as to deny them care in the name of profit. Look at the behavior of drug manufacturers, pharmacy benefit managers, insurance companies, and hospitals — they all prioritize profits over patient care.”

Are physicians losing public trust?

Drug Approval/Reimbursement Process in Ireland

Once a medicine has been approved at a European level, the pharmaceutical company will make separate applications for reimbursement at a national level in different EU or EEA countries. In Ireland these applications are made to the HSE Corporate Pharmaceutical Unit (CPU) who then commission the National Centre for Pharmacoeconomics (NCPE) to carry out an assessment on that medicine.

A full health technology assessment (HTA) is a systematic assessment of the clinical and cost-effectiveness of a medicine. Only a selection of medicines are required to undergo a full HTA as part of the drug reimbursement process. The NCPE full HTA assessment takes approximately 18 weeks to complete, exclusive of the duration the HTA is queried with the Applicant (approximately five weeks as part of the stop/clock process). The full HTA report consists of the following information:

  • Disease background and epidemiology
  • Detailed description of current clinical practice and treatment options
  • Detailed description of the intervention (drug) under assessment
  • Detailed review of the clinical and comparative efficacy of the drug under assessment
  • Detailed review of the safety and comparative safety of the drug under assessment
  • Detailed review of the cost-effectiveness of the drug under assessment
  • Detailed review of the budget impact of the drug under assessment.

The outcome of a full HTA is a recommendation to the HSE on reimbursement. 

I’m confused…

Do public cancer patients have the same chance of living as those with health insurance? It appears you have across all cancers a better, faster access to cutting-edge drugs in the private system compared to the public system

Are pharmaceutical companies making separate applications for reimbursement at a national level in a timely manner? If so why is this?

Is NCPE adhering to its own time frames? If not why?

It appears that up to 40% of the new medicines approved by the EMA are not even assessed by the HSE because its approval system is so protracted it can sometimes take up to three years for the health authority to decide whether to provide the drug free of charge.Is this a process being used to slow down the approval of new drugs to save money?

Who is actually in Charge of spending the Taxpayers money?????