Live UTI Free

Can we interview you for our new UTI research study? We’re currently looking to hear from people living with recurrent UTIs for an interview-based study. This research aims to understand the healthcare patient experience for recurrent UTI, including factors such as patient-doctor communication and shared decision-making. For this study, we are looking for people of any gender who: ◾ Currently live in the United Kingdom (England, Scotland, Wales, or Northern Ireland). ◾ Have experienced either two or more UTIs in the past six months or three or more UTIs in the past year. ◾ Are a native English speaker or have an advanced English fluency level. ◾ Do not have a current diagnosis of interstitial cystitis. For more info on how to take part in an interview, click on the link in our profile. Feel free to contact us if you have any questions. We hope that this research will help the patient's voice to be heard more, ultimately improving the patient experience. Please note that whilst this research study focuses on UTI healthcare systems in the UK, we continue to explore and prioritise improving patient experiences worldwide. We aim to expand this research in the future, and in the meantime, we are leading and collaborating on multiple other UTI projects with teams across the globe. Get in touch to find out more. #liveutifree #UTIresearch #patientexperience #bladdersmatter

It's fantastic to see the launch of our new study into the patient experience of recurrent UTI. We look forward to seeing the outcome of your work, Abbi Newlands!

The Alliance for Patient-centred UTI Research (APUR) is being unveiled this month at the UTIGA (UTI Global Alliance) conference. APUR is a collaboration between Live UTI Free, Chronic UTI Australia, CUTIC (UK) and UTI Health Alliance (US). APUR is a global alliance working to improve the lives of millions of people living with urinary tract infection (UTI) by advancing the understanding and management of UTI through patient-centred research and advocacy. #uti #womenshealth #womenshealthcare #femalehealth #womenswellness #urinarytractinfections #chronicuti #recurrentuti #intercystialcystitis #bladdersmatter #bladderinfection https://lnkd.in/dmEPsn6H

This Saturday, 20 July, Melissa Kramer will be joining Laura Preves Helgeson to share patient perspectives on recurrent and chronic UTI at the 2024 Clinical and Scientific Advances in UTI conference: https://lnkd.in/d9v9k2-d Organised by the Urinary Tract Infection Global Alliance (UTIGA), the conference will cover a wide range of UTI-related topics. We're very proud to represent our own Alliance for Patient-centred UTI Research (APUR) on behalf of its founding organisations, Chronic UTI Australia, CUTIC, UTI Health Alliance and Live UTI Free. We look forward to sharing more about the work of these four organisations, including our own team's development and validation of two patient reported outcome measures (PROMs) for recurrent UTI. The Recurrent UTI Symptom Scale (RUTISS) and the Recurrent UTI Impact Questionnaire (RUTIIQ) are available for all researchers to use, to better measure patient outcomes. For more information on these tools, reach out to InSpired Health Outcomes Limited. We're excited to see more research focusing on recurrent and chronic UTI and we hope to take part in further conferences on the topic in the near future.

Each year, we publish a UTI testing directory alongside our clinician resource: Improving Treatment Pathways for Patients with Persistent Lower Urinary Tract Symptoms. We provide resources like these to encourage open discussions between patients and clinicians, and to help patients prepare for their appointments. The directory, our clinician resource and a worksheet for patients can be found on our website: https://lnkd.in/dEns2v_U The clinician resource covers persistent UTI along with the interconnectedness of the urinary and vaginal microbiomes. These related topics help highlight why our directory incorporates companies that offer related testing services in addition to their UTI test, such as vaginal swabs, prostate tests, and direct-to-patient ordering. One of our medical advisors, Dr. Michael Hsieh, helped guide our clinician resource and shared the following insights about the diagnosis of persistent lower urinary tract symptoms: “I think some patients with the diagnosis of interstitial cystitis have an occult UTI with difficult to culture organisms. By utilizing more accurate testing methods, we are able to identify pathogens in many cases, and develop appropriate treatment. Even as a physician who has conducted microbiome research for a number of years, I was initially skeptical of urine microbiome testing as a means to diagnose UTI. However, based upon patient and clinical experience, microbiome testing appears to not only be accurate in the right setting, but also may predict imminent UTI in some patients.” We appreciate the support of our research and medical advisors: Michael Harrison Hsieh, Lindsey Roberts, Katherine Finlay, Krystal Thomas-White, and co-authors: Jessica Price and Melissa Kramer. Thanks to EmeritusDX - A Cancer Diagnostic and Information Company, MicroGenDX, Systems Biology Laboratory UK c.i.c, and Focus Medical Diagnostics for continuing to support our community and for working towards better patient outcomes. #utidiagnostics #utitest #bladdersmatter #womenshealth #liveutifree

Expertise in localisation required! We're looking for advice on translation/localisation from any tech or translation experts who have worked on this before. 

How is the vaginal microbiome connected to UTI? In our second interview with Krystal Thomas-White, Senior Scientist at Evvy, we explore this connection while answering the following and more: ● What do a healthy vaginal microbiome and a healthy urinary microbiome look like in terms of organisms? ● Do biofilms and intracellular bacterial communities exist in a healthy body? ● Why do ‘good bacteria’ sometimes overgrow? ● How quickly does the vaginal microbiome change over time, and what causes it to change? ● How does the vagina clean itself? ● Do antibiotics destroy the good bacteria in the vaginal and urinary microbiome? Watch the full interview on our YouTube channel ➡ https://lnkd.in/die5HNkU If you're an expert who would like to share insights with our community, we'd love to hear from you. #bladdersmatter #urinarymicrobiome #vaginalmicrobiome #probiotics #chronicuti #recurrentuti

How should DNA-based UTI and vaginal swab test results be interpreted? In part two of our interview with Dr. Nick Parkinson from Systems Biology Laboratory UK c.i.c ● If multiple organisms are identified do the results help determine which should be treated first? ● With repeat testing for the same patient, have you seen that treating one organism can lead to another becoming prevalent and potentially causing symptoms? ● Do you often see patients returning with the same organisms in their test results, despite having completed treatment for those organisms? ● How are antibiotic recommendations provided? ● Can patients order a test directly, and if so, will they receive antibiotic recommendations? ● Is it possible that an organism below the threshold could be causing symptoms? ● Is it possible for someone to request a full list of organisms detected? Watch the full interview on our YouTube channel ➡ https://lnkd.in/dKieyQZd If you're an expert who would like to share insights with our community, we'd love to hear from you. #utitesting #antibioticresistance #recurrentuti #chronicuti #womenshealth #bladdersmatter

Can DNA sequencing detect organisms contained within a biofilm or intracellular bacterial community? We've recently published another expert interview requested by our community, to answer this and many other questions. In part one, we discussed the following topics with Dr. Nick Parkinson from Systems Biology Laboratory UK c.i.c ● Is it always recommended that a vaginal swab test be conducted alongside a urine test, for female patients? ● Can PCR or NGS tests confirm the presence of biofilms, and is it important to know whether a biofilm is present? ● Are there particular organisms that you see most frequently in cases of recurrent or persistent UTI? ● Given organisms are always present in the urinary tract, how do we know if the organisms identified are causing symptoms? ● Is it possible for known pathogens to live in the bladder microbiome and not cause symptoms? ● Is it possible for ‘good bacteria’ to cause symptoms, and have you seen evidence of this in your research? ● Is there any benefit to testing in between UTI episodes, when symptoms are not present? ● Have you done any testing on probiotics themselves, to see whether they contain what is listed on the label? Watch the full interview on our YouTube channel: https://lnkd.in/drFzbm2K If you're an expert who would like to share insights with our community, we'd love to hear from you. #utitesting #antibioticresistance #recurrentuti #chronicuti #womenshealth #bladdersmatter

It's #EqualResearchDay again, and there is still so much work to be done. Check out the 100 Effed Facts about the Gender Health Gap, compiled by Evvy.