Ash Rust’s Post

Next up at #IWGGD: Elin takes to the stage to present FEEDS and Aparito's work in assessing pediatric feeding in neuronopathic GD using #vCOAs. Curious about FEEDS? Learn more on our feasibility study site here 📝 https://hubs.li/Q02xyvHl0 #GaucherDisease

One of the areas we get involved in is research into new treatments and tests for pre-eclampsia and this paper out today - the Parrot 2 Trial is essential reading for clinicians and commissioners on the value of repeated PlGF testing. Marcus Green, CEO of Action on Pre-eclampsia, said: “These are really important findings showing that once the first test has been done, there is nothing to be gained from further testing. A single test can assure women with certainty if they are likely or unlikely to get pre-eclampsia. We look forward to completion of roll-out of placental growth factor-based testing across England, with an urgent call for implementation in the devolved administrations across all four nations. These new results also provide a timely opportunity to tackle the higher burden of adverse outcomes due to pre-eclampsia in global settings.” Please share this widely. https://lnkd.in/eA4JmZsT

Really valuable bit of research - earlier work has demonstrated the utility of a predictive test for #preeclampsia (much cheaper and easier than doing placental blood flow analysis from ultrasound, too) - but doing more tests doesn't add further value. It is as important to know when and where #NHS tests do NOT offer benefits as when they do! It may not have the glamour of a 'shiny new thing' (test/product/intervention) but this is evidence that commissioners need...and from which patients and the public benefit.

Diagnosis in the dark: the need for R&D of diagnostics for pre-eclampsia While #preEclampsia is a leading cause of #maternalMortality and morbidity, the ability to diagnose it is still limited. On #WorldPreEclampsiaDay, Concept Foundation (non-profit), Policy Cures Research and Burnet Institute highlight the need for #research and development of products that can effectively diagnose pre-eclampsia, and support #healthWorkers to make decisions that can improve the #health of women and babies.  📒 READ OUR NEW REPORT to learn more about the challenges and opportunities in pre-eclampsia diagnostics ● Few pre-eclampsia diagnostics approved ● Limited interest from the industry ● Delays in translating our understanding of pre-eclampsia into diagnostics R&D Learn more about our pipeline #analysis: https://bit.ly/3USfRlH Download the full report: https://bit.ly/3UTThcw 👩💻ATTEND OUR 5 JUNE WEBINAR to discuss how pre-eclampsia diagnosis can improve #womensHealth and learn more about novel #technologies in pre-eclampsia diagnostics. 5 June 15:00 – 16:00 CET Register for the #webinar: https://bit.ly/3K6No6E

Per RealClearHealth - "Over the course of the workshop, one foundational reason arose to develop and bless an 'official' definition: precision counts. Defining 'ultra-rare' will assist in designing clinical programs and regulatory review. It will help facilitate investment, if incentives are tied to such a designation. It will move FDA away from 'regulatory flexibility' towards a more standardized process. Defining 'ultra rare' will provide predictability." - https://lnkd.in/dxJF89b - #raredisease - EveryLife Foundation for Rare Diseases

Precision matters. It especially matters for rare and ultra-rare disorders. "Per RealClearHealth - "Over the course of the workshop, one foundational reason arose to develop and bless an 'official' definition: precision counts. Defining 'ultra-rare' will assist in designing clinical programs and regulatory review. It will help facilitate investment, if incentives are tied to such a designation. It will move FDA away from 'regulatory flexibility' towards a more standardized process. Defining 'ultra rare' will provide predictability." - https://lnkd.in/dxJF89b - #raredisease - EveryLife Foundation for Rare Diseases"

✨ Congratulations to Houman Jalaie who is PI and responsible of STEVECO Trial 👏👏. I am stongly believe that, results of this study gives a huge impact to recanalization and venous stenting for patients Suffering chronic venous obstruction 🙌 ✨ Although recruitment was severely affected by Covid-19, and in the end only 63 patients were randomised, stenting was associated with better results. 🎙️Dr. Jalaie and colleagues conclude that; symptomatic patients with CVO who received dedicated venous stents experienced statistically significant improvement according to VEINES-QoL/Sym, PDI, and VCSS at one year compared with the control group👍 📌 Check out this latest #EJVESVA for the EC's paper "Quality of Life after Stenting for Iliofemoral Venous Obstruction; A Randomized Controlled Trial with 1 Year Follow Up" by Soroosh Shekarchian, Jorinde van Laanen, Mohammad E. Barbati , Marie-José Vleugels, Patty Nelemans, Mahmood Razavi , Barend Mees, Michael J. Jacobs, Houman Jalaie👏👏 #deepveinthrombosis #chronicdeepveinthrombosis #venousstenting #postthromboticsyndrome #ejves #esvs #stevecotrial #iliofemoral #venousobstruction #qualityoflife

Clinical Experience Will Shed More Light on New Preeclampsia Test https://lnkd.in/gEwJ6cGt

NICHD is highlighting some of the work they are doing to address rising stillbirth dates including the Working to Address the Tragedy of #Stillbirth Report, new Rapid Acceleration of Diagnostics Technology Fetal Monitoring Challenge, aligning existing data collection to record adverse fetal outcomes and new possible funding opportunities for stillbirth research.  https://lnkd.in/eUhhMQEM #maternalhealth #maternalchildhealth #infanthealth #maternalmentalhealth

🌟 Welcome to Day 23 of FAST UK’s Advent Calendar! 🌟 Today, we’re proud to highlight a key achievement: A total of 141 people from the UK have registered in the Global Angelman Registry! 🌍📋 This participation is crucial. The registry is a vital tool for understanding Angelman Syndrome better, helping researchers and healthcare professionals develop more effective treatments and care strategies. Each registration represents a valuable contribution to the global effort to improve the lives of those living with AS. The registry includes a diverse age range, with 33% aged 3-8 years and 26% over 18 years. The data shows a near-even split between female and male registrants, reflecting the broad impact of Angelman Syndrome across genders and ages. Among these, 36% have a deletion diagnosis, 8% a mutation, 6% UPD/ICD and others fall into various categories (including unknown), providing valuable insights across genotypes. A huge thank you to every individual and family who took this important step. Your involvement is making a real difference in the advancement of AS research and care. Get started by clicking this registration link: https://lnkd.in/ekkafQxD #FASTUK #AngelmanSyndrome #GlobalRegistry #ResearchAdvancement