Traveller women who do want to breast feed are obliged to wait for up to three days before starting. The first days of breast feeding are crucial in establishing successful milk flow and the poor breastfeeding rates (2%) amongst Traveller women is likely to be due in part to this practice. This is supported by a recent report published by Pavee Point Traveller and Roma Centre. This practice, set up with the best intentions, is at odds with the HSE’s commitment to diversity, equity and inclusivity. It is contra to existing policy frameworks, including the National Maternity Strategy and the HSE Breastfeeding Action Plan 2016 – 2021.

If Traveller women were offered genetic carrier testing during pregnancy, only those whose babies remained at high risk would need to observe the current practice.

Children’s Heath Ireland propose a proof of concept pilot study in collaboration with CHI at Crumlin and CHI at Temple street, Pavee Point and the Rotunda hospital to offer carrier testing to Traveller women at booking. Women who test negative can choose to feed their babies whichever way they like, by breast feeding or using regular infant formula.

Children’s Health Ireland aim to see if antenatal genetic testing is acceptable by women from the Irish Traveller population and how those that opt for testing view the process afterwards. If it is successful they will lobby for its introduction nationally.

Click here to watch the video

Https://vimeo.com/1036673490/109cf72e0a?share=copy

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Children’s Health Ireland (CHI), in partnership with St. James’s Hospital have successfully opened Ireland’s first early phase clinical trial, enrolling eligible children with Duchenne muscular dystrophy (DMD). The global trial, called DELIVER, which started in August 2022 as the first-in-human (phase 1/2) trial of a therapeutic called DYNE-251 at sites around the world targets male children with a specific type of DMD (children amenable to exon 51 skipping). The trial is being delivered by the HRB CHI Clinical Research Centre and the Wellcome HRB Clinical Research Facility at St James’s Hospital and involves delivery of a next generation molecular therapy developed by Dyne Therapeutics, a Massachusetts based biotechnology company, specialising in the development of therapies for rare muscle diseases. The study is progressing through at sites around the world but is the first time such an early phase trial has been conducted in children in Ireland.

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This new study is necessary as people with Down syndrome have a significant risk of developing Alzheimer’s disease (AD). Recently new drugs have come on stream which have been shown to slow the progression of Alzheimer’s for those in the early stages of the disease. The challenge for doctors is to determine if individuals with Down syndrome can also benefit from these treatments.

In order to properly test these treatments, there will need to be carefully designed studies. Traditional tests, cerebrospinal fluid sampling, and brain scans are invasive and expensive, therefore it would be easier for participants if blood tests could be used to detect and track potential treatment effects.

Dr O’Connor says, “We are entering a new era in AD treatment– for the first time there are therapies that can slow disease progression. Frustratingly, people with Down syndrome have been routinely excluded from AD drug trials, despite urgent clinical need in this population. Therefore, we do not know if these potentially life-altering treatments work in Down syndrome.”

The TUH Consultant Neurologist says, “Robust clinical trials involving those with Down syndrome will need to be undertaken to track the changes in them caused by Alzheimer’s disease. These measures of change are called biomarkers.  Blood tests represent an ideal AD biomarker as they are cheap, accessible and repeatable.”

Several important questions must be answered before blood tests for AD can enter routine use for those with Down syndrome. Dr O’Connor’s new research study will address some of these, specifically:

• What blood tests are the most promising for the detection of AD in Down syndrome?
• Do blood test levels vary from day to day and does this variability impact their ability to diagnose AD and/or track change?
• What role does inflammation play in driving AD onset?
• How long, and how many people, are required to participate in AD clinical trials to show a treatment effect in Down syndrome?”

This new study will answer these questions by reviewing previous blood biomarker studies in people with Down syndrome and by collecting repeated blood samples from study participants. These blood samples will also enable Dr O’Connor and her team to investigate the role of inflammation in AD which could potentially open up new treatment avenues.

The Deputy CEO of TUH John Kelly who is also the executive lead for Research & Innovation at the Hospital says, “This kind of research is important as it can result in medical breakthroughs which can lead to the discovery of life-changing treatment. We at TUH are delighted to host this cutting-edge study as Dr O’Connor and her team strive to improve care for Down syndrome patients with Alzheimer’s. This study reflects our commitment to the discovery of new treatments for wider health improvements.”

The research which will be undertaken at TUH, has been funded by the Health Research Board under their Emerging Clinician Scientist Award.

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Decisions about which risk management strategies to choose can be complex and women often struggle with the decision-making process.

Researchers from the Breast Care department in St James’s Hospital and the School of Nursing and Midwifery, Trinity College Dublin have developed a web-based patient decision aid for women with a BRCA alteration to support the decision-making process for these women.

Development of the decision aid was guided by international best practices in decision aid development and involved direct patient input.

This evidence based decision aid includes information, graphics and images relating to cancer risk, surgical and medical options and potential side effects. The website also includes activities where women can work through their feelings in relation to each of the options that they are considering. This will assist women in understanding their risk and options; empowering them to make an informed choice as part of their personal risk-management strategy.

The decision aid can be widely circulated and accessed by patients and clinicians at home and within breast cancer family-risk clinics. Breast cancer family-risk clinics are regularly held throughout Ireland. The use of this decision aid will enable the patient and clinician to have more focused and meaningful discussions regarding risk-reducing strategies based on trusted evidence, facilitating more in-depth shared decision-making. Having the most current evidenced based information readily accessible will instil confidence when making such complex important healthcare decisions.

The decision aid (brcadecisionaid.ie), which was funded by the Irish Cancer Society, will go live on October 31^st with a formal launch to follow.

For more information contact:

Yvonne Hanhauser yhanhauser@stjames.ie or Dr Sarah McGarrigle, Email: smcgarrigle@stjames.ie

The website will be available at https://www.brcadecisionaid.ie

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The project is funded by the Health Research Board and the Central Remedial Clinic (CRC) under the HRCI-HRB Joint Funding Scheme. We heard from young people aged between 13- 17 years with a physical disability across the Republic of Ireland. We learned what really matters when it comes to being physically active so that we can empower, encourage, and sustain future physical activity participation in a meaningful way.

visit: www.youthexperiencematters.eu

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