The Netherlands Cancer Institute’s Post

𝗟𝘂𝗻𝗴 𝗰𝗮𝗻𝗰𝗲𝗿 𝗮𝗻𝗱 𝗯𝗿𝗮𝗶𝗻 𝗺𝗲𝘁𝗮𝘀𝘁𝗮𝘀𝗲𝘀🧠 In lung cancer, metastases to the brain are common. Our researcher and lung specialist lizza hendriks studied whether those metastases can be predicted. In interviews with patients and their loved ones Lizza and her research group also explored whether people with lung cancer want screening to examine if cancer spread to the brain, even if there are no symptoms yet. Read the full article below (Dutch only).👇

Promising results

Definitely worth reading! With their new report, IKNL (Integraal Kankercentrum Nederland) and DICA (Dutch Institute for Clinical Auditing) not only highlight the complexity of healthcare in head and neck oncology but also underscore the importance of the head and neck audit. By including PROMs (patient-reported outcome measures), this audit provides more insights into the quality of care, patient experiences, and treatment outcomes. I'm especially glad to see that shared decision-making (SDM) will be one of the next priorities. More attention should be given to the individual and their loved ones by tailoring care to their specific needs, particularly seeing the person behind the disease. The audit is certainly a step in the right direction. However, I’m curious about how health(care) communication will be applied to bring these insights to life and, more importantly, how the outcomes from the PROMs will be linked back to patients in meaningful ways. While PROMs already have proven, according to the report, to offer invaluable data to shorten the processing time from diagnosis to treatment, to lighten administrative work for healthcare providers, and to exchange best practices exchange between centers, there is, in my opinion, still work to do when it comes to how this information is communicated to patients and integrated into oncology consulting. For shared decision-making to truly take place, patients must not only be adequately informed and involved in their care decisions but also understand the importance of their feedback to influence their treatment plans and recovery options. In this context, we could for instance think of questions such as 'How do we best inform patients about the role PROMs play in improving their care? How do we and how do providers want to be trained to use this data to engage patients in conversations that reflect their values, goals, and preferences?' In light of this, I wonder whether audiovisual tools such as (animated) videos could play a role in making this information more available. Complex treatment-, posttreatment, and quality-of-life-related information that is based on PROMs might be challenging for patients to fully understand and comprehend through verbal communication and/or text alone. People are likely to process information better when provided simultaneously through audio and visuals and, consequently, animated video may support healthcare providers in providing this information thereby facilitating shared decision-making. As we move toward more person-centered healthcare, I hope to see more efforts in the future to ensure that health(care) communication plays a more prominent role in patient care. Tailored communication, driven by PROMs data and enhanced by innovative tools like audiovisual tools, could be key in empowering patients and contributing to shared decision-making. #animatedvideos #shareddecisionmaking #PROMs #empowerpatients #personcenteredcare #headandneckoncology

Creating impact with new research findings! 🔬 Find an interesting read below on the innovative research of the department of Pathology, the research group lead by Riccardo Fodde. 📈 Technology Transfer Office (TTO) – Erasmus MC, specifically Carmen Correa, LLM - RTTP and Thom Joosten, evaluated the potential of this invention and helped with the patenting process. TTO is also engaged in finding companies that could bring this invention further as well as making the necessary arrangements with the other parties involved in the invention. Erasmus MC #ovarian #cancer #treatment #impact

AI-based tumor volume follow-up aiming to improve patient care! 👨💻 👩⚕️ In this video (in Dutch) we explain why it is incredibly hard to measure whether treatment is working in patients with pleural mesothelioma. We aim to improve clinical practice by leveraging AI to enable the quantification of the total tumor volume in CT scans instead of measuring diameters, with humans in the loop. Building on top of our AI-based tumor volume quantification, we crafted a novel guideline (ARTIMES) for the interpretation of tumor volumes over time to answer that one important question: 'does the treatment work, and if so, to what extent?' Happy to share that our work was accepted as oral presentation at #ESMO 🎉! Many thanks to all the co-authors, this project truly is (and will remain) a team effort! We will share more information about our work during this session: https://lnkd.in/escDHTfx While we are excited about current results, and are working towards clinical implementation (#MDR), we are also looking at future applications: leveraging this technology to accurately assess the response pattern of thousands of patients in international collaborations. This will hopefully yield much needed insights in which patients respond well to what treatment, potentially enabling #precisionmedicine in the future.

🔺Why are women worldwide still waiting for implant registries? What can the Dutch Breast Implant Registry tell us? See Marga’s Link below. In 2003, European Medical Devices Regulations raised silicone breast implants from Class IIb to a stricter Class III category making implant passports AND implant registries essential for post market surveillance, vigilance and long term safety monitoring. 🚩 By 2006, coincidental with the reintroduction of silicone breast implants to the US market, the UK regulator #MHRA took the extraordinary step to de-commission the UK Breast Implant Registry. By 2010, when women with PIP implants began dying from BIA ALCL, a cancer caused by breast implants, it was obvious that even without these key monitoring tools, action on adverse event reporting should have taken place and should have highlighted serious regulatory flaws. Legal cases brought by victims of the PIP implant Fraud found NEGLIGENCE at the heart of medical devices recall regulation in the EU and in countries where trade agreements with the EU existed. The CE Mark, approved Criminal Endangerment to some, has become a corrupted system that actively puts a cloak of legal immunity and secrecy around any form of evidence gathering for patient safety, product safety, scientific testing or impartial research. The “No Evidence” defence is relied on to undermine the Evidence. What does a consensus of surgeons tell us about BIA-ALCL the implant cancer, if the chemical composition and processes involved in the manufacture of silicone breast implants are unknown? What does this mean for patient safety? What difference does it make to industry stakeholders? #RegulatoryCapture is a form of corruption. The WHO recognised PIP public health scandal impacted on the health and lives of more than half a million women globally, and provided the perfect market opportunity for industry to enjoy a massive uptick in profits resulting from terrified women seeking medical care, desperate to remove and/or replace their leaking, ruptured and disintegrating breast implants. There was no actual recall of PIP implants! The majority of women affected by PIP and their PIP exposed children continue to report serious and permanent injuries a decade on. How much different are PIP implants from other brands of breast implant? How many lives lost? Even now women’s health concerns are routinely trivialised and brushed aside using classic gaslighting techniques widely practised in reconstructive and cosmetic surgery. Most surgeries and implant complications are not recorded and records are not available for surgeons or patients to make informed choices about the safety of breast implants. Why are most women in Europe and elsewhere still waiting for critical regulatory tools for patient safety improvements? You tell me! Eleos Fry, Global Game of Implants

LET SCIENCE KEEP WORKING! Thank you NFU - Nederlandse Federatie van Universitair Medische Centra for sharing our work that is in line with the three main themes of the sector plans (https://lnkd.in/e7qCG-RD): 1. Prevention: our preimplantation genetic testing (PGT) method prevents that serious genetic disorders are passed on to the next generation; 2. Data-driven innovation: our PGT method makes use of the massive whole-genome sequencing data and creats an opertunity for data-driven and evidence-based reproductive care; 3. From fundamental research to clinic and practice: in Maastricht UMC+ we have built 25 years knowledge and expertise to provide best possible care to patients across the Netherlands. Together with our colleagues in PGT Nederland (https://lnkd.in/ejdbHrr7) from UMC Utrecht, Amsterdam UMC and UMCG, we have ensured that patients in need have access to IVF close to their home and only the DNA from their embryos travel to Maastricht. In Clinical Genetics Department of Maastricht UMC+, we constatly improve our genetic testing methods to broaden the scope of our test and shorten the tuern-around-time for all families in need. We create fundamental knowledge about the early life through discoveries that has been made possible by development and application of new genetic testing technologies. Fundamental knowledge that the state-of-the-art technologies are blind for. LET SCIENCE KEEP WORKING for the sake of best possible start - the first segment of our healthcare system: REPRODUCTIVE HEALTH

𝐙𝐨𝐧𝐌𝐖 𝐎𝐩𝐞𝐧 𝐂𝐨𝐦𝐩𝐞𝐭𝐢𝐭𝐢𝐞 𝐆𝐫𝐚𝐧𝐭 𝐄𝐝 𝐄𝐫𝐢𝐧𝐠𝐚 𝐚𝐧𝐝 𝐂𝐚𝐬𝐩𝐞𝐫 𝐒𝐜𝐡𝐚𝐥𝐤𝐰𝐢𝐣𝐤 Dr Ed Eringa and Prof. Casper Schalkwijk have received a grant within the ZonMw open competition programme of €750k on the origins of type 2 diabetes. 𝐈𝐭 𝐭𝐚𝐤𝐞𝐬 𝐭𝐡𝐫𝐞𝐞 𝐭𝐨 𝐭𝐚𝐧𝐠𝐨: 𝐟𝐚𝐭 𝐯𝐞𝐬𝐬𝐞𝐥 𝐜𝐫𝐨𝐬𝐬𝐭𝐚𝐥𝐤 𝐢𝐧 𝐦𝐮𝐬𝐜𝐥𝐞 𝐚𝐭 𝐭𝐡𝐞 𝐨𝐫𝐢𝐠𝐢𝐧 𝐨𝐟 𝐝𝐢𝐚𝐛𝐞𝐭𝐞𝐬 With this research we aim to elucidate the role of fat around microvessels in muscle in type 2 diabetes and muscle weakness. We hope to discover that this fat controls contraction and glucose uptake of muscles, and its functions can be normalized in type 2 diabetes by locally treating it with medicine. To achieve this, we will make images of this fat and sugar uptake in muscles of healthy people and people with early diabetes, and precisely characterize gene expression in muscle fat. We will study the effect of muscle fat on sugar uptake and strength in human “muscles in a dish” built from muscle cells, human microvessels and human muscle fat. Finally, we will remove muscle fat in obese mice, or treat it with a smart coating containing an anti-inflammatory drug. Our research can lead to new therapies to reverse type 2 diabetes. The project is a collaboration between Amsterdam UMC, Maastricht UMC+ and Maastricht University . More on the ZonMW Open Competitie grant: https://lnkd.in/e-5YdybR.

Everyone knows what cancer is. But who knows what a #sarcoma is? In Belgium, only 1 in 10 people... (*) And yet every day, 3 fellow citizens are told they have a sarcoma. 💡 A sarcoma is a malignant tumor that develops in the connective tissue of our body. The tumor can occur in muscles, nerves, fat, blood vessels, tissue between our organs, cartilage, and even bone. Because sarcomas are relatively unknown and often do not cause pain in the early stages, they are frequently detected late. This worsens the prognosis for a patient... An initiative like Sarcoma Awareness Month is therefore very important. By informing people more and better, we can detect sarcomas earlier and treat people better. 👀 Want to learn more about sarcomas? Keep an eye on our LinkedIn page in the coming weeks. We will be sharing more news about this rare form of cancer. (*) In 2023, we conducted a survey which revealed that only 1 in 10 Belgians knows what a sarcoma is: https://lnkd.in/eSFTeTc7 #cancercare #sarcomaawarenessmonth All.Can International Stichting tegen Kanker - Fondation contre le Cancer Stichting Kankerregister Cum Cura vzw https://lnkd.in/e2sPwMqk

🔴 Published in Nature Portfolio (Nature Medicine) the first promising results on progranulin AAV gene therapy for frontotemporal dementia (FTD-GRN) - translational studies and phase 1/2 trial interim results. → Read the Publication in Nature Medicine https://lnkd.in/eAXWGKVU ✔ These data provide preliminary insights into the safety and bioactivity of PR006, an investigational gene therapy delivering the granulin gene (GRN) using an adeno-associated virus serotype 9 (AAV9) vector. Longer follow-up and additional studies are needed to confirm the safety and potential efficacy of PR006. A unique collaboration between : - Prevail Therapeutics (Eli Lilly and Company) - Prof. Rik Vandenberghe from Neurology (UZ Leuven) and Lab Cognitive Neurology (KU Leuven - Leuven Brain Institute and Mission Lucidity) - Prof. David Irwin, Penn Frontotemporal Deneration Center (University of Pennsylvania) - Prof. Le Ber and Dario Saracino (Institut du Cerveau – Paris Brain Institute) - Prof. Rebekah Ahmed, Department of Neurology, Royal Prince Alfred Hospital, Sydney - Prof. Jonathan D. Rohrer, UCL, UK Dementia Research Institute - Prof. Adam Boxer, Department of Neurology, Memory and Aging Center, University of California, San Francisco #FTD #genetherapy #neurology #braindisease