Graziano Onder’s Post

Do you want to help acromegaly patients get diagnosed sooner? Read on for an opportunity to participate in a study led by St. Michael’s Unity Health Toronto. ⤵️ We know that earlier diagnosis usually improves outcomes and quality of life. Please take part in our international research study that uses computer technology to try to diagnose patients sooner by detecting the earliest features of acromegaly. We are looking for individuals who currently have or previously had acromegaly (including gigantism) or other types of pituitary adenomas/tumours to participate. Your participation in this study is critical to help develop the most accurate tools for diagnosis and greatly improve the quality of life of future patients. In this study, you will be asked to upload your photographs and complete a questionnaire, for use in a machine learning analysis. You can access the study using the link provided below. If you have questions about taking part in this study, you can send an email to the research team at acromegaly-research@smh.ca or telephone at 001-416-864-5312. Thank you for considering participation in this project. For more information on the study or to participate, please click on the URL link below or enter it in your browser or scan the QR code: https://lnkd.in/gUsBYFFK #Acromegaly #Gigantism #Pituitary #RareDisease #AcromegalyResearch

Do you want to help acromegaly patients get diagnosed sooner? Read on for an opportunity to participate in a study led by St. Michael’s Unity Health Toronto. ⤵️ We know that earlier diagnosis usually improves outcomes and quality of life. Please take part in our international research study that uses computer technology to try to diagnose patients sooner by detecting the earliest features of acromegaly. We are looking for individuals who currently have or previously had acromegaly (including gigantism) or other types of pituitary adenomas/tumours to participate. Your participation in this study is critical to help develop the most accurate tools for diagnosis and greatly improve the quality of life of future patients. In this study, you will be asked to upload your photographs and complete a questionnaire, for use in a machine learning analysis. You can access the study using the link provided below.      If you have questions about taking part in this study, you can send an email to the research team at acromegaly-research@smh.ca or telephone at 001-416-864-5312. Thank you for considering participation in this project. For more information on the study or to participate, please click on the URL link below or enter it in your browser or scan the QR code: https://lnkd.in/gUsBYFFK #Acromegaly #Gigantism #Pituitary #RareDisease #AcromegalyResearch Unity Health Toronto

Cardiovascular disease research historically has not included enough women or any at all, and that's just the start of it - health inequality and outcomes disparity by gender and race is an enormous issue in heart disease research and treatment. More men than women have heart attacks, but more women die from them. Black women are twice as likely to die from a stroke than white women. Younger Hispanic women who have a heart attack face a higher risk of dying compared with younger Hispanic men. You don't have to wonder hard to guess why these disparities remain. As recent as 2020, only 38% of research participants in clinical cardiovascular studies were women. My cardiologist once said, "Women are not just small men," and I am grateful that he recognized that I, as a young heart patient, had different needs. He is a rarity, however, and even he didn't know about the connection between maternal health and my heart attack (a story for another day). I want researchers and physicians to do better. That's why I am part of the #GoRedWomanofImpact campaign and why I encourage you to sign up for Research Goes Red, a project of Go Red for Women and Verily’s Project Baseline that calls on women across the United States to contribute to health research. Find out more here:

There are NEW Clinical practice guidelines for the care of girls and women with Turner syndrome for 2024! This report is intended to provide clinical recommendations for the care of patients with TS across the lifespan. It is an excellent resource for patients and healthcare providers to equip themselves with information! Within the 99-page document, find information about diagnosis and genetics, various aspects of health and well-being, and more! Find it here: https://lnkd.in/erSH5Zbu #turnersyndrome #geneticdisorder #patientcare

The Evidence Speaks is a recurring feature highlighting the latest in research from the Centre for Advancing Health Outcomes. In February’s edition heatwaves may increase cardiac arrests and decrease survival, increased training and resources may increase initiation of treatment for opioid use disorder in emergency departments and early access to genetic testing lead to quicker diagnoses for childhood developmental and seizure disorders and save money in the Canadian health care system. Check it out here: https://lnkd.in/gwqU7VhP #research #healthcare #healthresearch #cardiacarrest #addictionmedicine #genetictesting

Amit Sachdeva, MD, and team: Ratnabhushan Mutyala, MD, Neha Mantri, MD, Shiyun Zhu, MPH, Edward McNulty, MD, and Matthew Solomon, MD, were funded by Kaiser Permanente Northern California Community Health and collaborated with the Kaiser Permanente Division of Research to answer this important public health question.  Article: https://lnkd.in/gr8dEWkD Citation: Sachdeva A, Mutyala R, Mantri N, Zhu S, McNulty E, Solomon M. P2Y12 Inhibitors in Acute Coronary Syndromes: A Real-World, Community-Based Comparison of Ischemic and Bleeding Outcomes. J Interv Cardiol. 2023 May 20;2023:1147352. doi: 10.1155/2023/1147352. PMID: 37251366; PMCID: PMC10224789.

May is Preeclampsia Awareness Month: This year's theme is: "Predict Prevent Prevail." 🚀 Did you know? Preeclampsia and other hypertensive disorders affect 5-8% of pregnancies, and we're still unravelling their mysteries. 🤔 Currently, we rely mainly on medical history to predict risks, and our prevention tool is prenatal aspirin for high-risk patients. But imagine if we could do more! 💡 Together, we can triumph over preeclampsia! 💪 It's a collaborative effort: patients advocating for research and better healthcare, researchers exploring new avenues with funding, clinicians implementing life-saving practices, and policymakers prioritizing maternal health research, including preeclampsia. 💬 Let's unite and make a difference! 🌍 Alisha Doherty Helen Rose Maryam Ghorbani #PreventPreeclampsia #MaternalHealth #ResearchMatters 🤰

🚨 Big News from the International Misophonia Foundation! 🚨 We've officially submitted a proposal to the World Health Organization (WHO) to classify Misophonia as a discrete disorder in the ICD-11. This is a major step toward gaining recognition, improving research, and ensuring better care for those living with this often-misunderstood condition. Our proposal is based on cutting-edge research highlighting Misophonia's neurophysiological basis and supported by a petition signed by over 1,000 individuals. These powerful testimonials shared the real-life challenges of living with Misophonia and the urgent need for its formal classification. We believe this is just the beginning. Moving forward, we call for greater collaboration among researchers, advocates, and organizations to unify efforts and improve understanding and treatment. Together, we can make a difference! 💙 Read the full proposal here: https://lnkd.in/gRazUN55 #MisophoniaAwareness #ICD11 #MentalHealthMatters #Misophonia

The final issue of The Patient for 2024 has been published (https://lnkd.in/gjBtR5Vk). In this issue: ·   Carolina Navas Cuerva, PhD, DVM et al. review the role of patient reported outcome instruments to measure treatment satisfaction across the life cycle of a drug therapy. They call for an increased measurement of treatment satisfaction in early and late phase drug development. ·   Eva-Lotta Hinzpeter et al. systematically review stated preference research in osteoporosis. They highlight significant heterogeneity and advocate for tailored treatment approaches ·   Benjamin M Craig et al. highlight a novel method for measuring health state preferences – Kaizen Tasks. They suggest a kaizen task is well suited for large descriptive systems or when targeting populations that are difficult to recruit  ·  In a preference study of neurodevelopment follow-up care Pakhi Sharma et al. found there would be a significant uptake of care when families ideal preferences were accounted for. ·  Loria-Rebolledo et al. report that in a study of preferences for intrapartum care in rural areas women preferred to give birth in locations better able to manage complications. ·   Lidia Engel et al. found that the EQ-HWB needs further development in order to be fit for purpose in residential aged care settings ·   Alex Keenan et al. in a stated preference study found that patients with multiple sclerosis being treated with S1PR modulators preferred treatments with shorter immune system recovery time and fewer interactions with other drugs. ·   Thi Quynh Anh Ho  et al. in a qualitative study regarding engagement of young people with web-based mental health interventions, found de-stigmatising campaigns are needed and that young people should be involved in the co-design of interventions ·      The final article in the issue contains the abstracts presented at the recent 15th meeting of the IAHPR. IAHPR Office.

Researchers: 📢 The NIH HEAL Initiative® issued a new notice of funding opportunity (NOFO) to support research aimed at a holistic understanding of inter-individual or between-person differences in human pain conditions. This NOFO will support studies focusing on whole person health and enhancing personalized pain treatment and management strategies. Learn more: https://lnkd.in/ea34_sUb #nihHEALinitiative