Patient voices can shape the future of UTI research

The Global UTI Project - STUDY NOW CLOSED

UTI (urinary tract infection) affects around 404 million people globally every year (85% in females), and is one of the biggest contributors to the antimicrobial resistance crisis.

Despite this, funding for UTI research is scarce. Clinical trials and patient-focused UTI research that do move forward are typically limited in terms of who is eligible to participate.

The Global UTI Project aimed to collect UTI experiences from all over the world, and we look forward to sharing our findings.

Study Goals

Our primary goals are to demonstrate to researchers just how many people suffer from recurrent or chronic UTI, and to illustrate how those experiences impact quality of life.

If we can demonstrate the vast scope of the problem, we hope more research will be funded.

Who joined the study?

Participants who:

Have female urinary anatomy
Are aged 18 or over
Experience recurrent or chronic UTI
Are based anywhere in the world and can complete surveys online

What did study participation require?

Participants can complete this entire study online and, depending on eligibility, will have the option to participate in one of two groups:

Cross-sectional group – Complete a short series of surveys, including a symptom tracking survey on a day they are experiencing UTI symptoms as well as one on a day they are not.

Longitudinal group – Complete a short series of surveys, then a symptom tracking survey every day for 40 consecutive days.

Who are the researchers?

The Global UTI Project is a collaboration between Live UTI Free, Chronic UTI Australia, CUTIC (UK) and UTI Health Alliance (US), which form the Global UTI Advocacy and Research Alliance (GUARA).

Live UTI Free is a patient and public involvement and engagement (PPIE), patient research and advocacy organisation, and co-author of two validated patient reported outcome measures for recurrent urinary tract infection. Alongside leading research, Live UTI Free provides free resources to those living with recurrent and chronic UTI. These resources include contact information for UTI specialists, free downloads to share with clinicians, and a vast range of educational materials, all via their website, YouTube channel, Instagram and other social media.

Chronic UTI Australia is a patient advocacy group for chronic and recurrent UTI sufferers.

Chronic UTI Australia was founded in 2018 as Australia’s first and only national patient advocacy organisation dedicated to urinary tract infection (UTI). As a not-for-profit organisation, Chronic UTI Australia strives to have UTI added to Australia’s public health agenda by advocating for awareness, recognition, education, research and improved testing and treatment for all forms of UTI. Chronic UTI Australia is proudly aligned with its international sister organisations in a new initiative for greater global advocacy for UTI. A united, worldwide push can only strengthen the patient voice and help achieve the changes we all seek.

CUTIC is a not-for-profit organisation formed by a small group of expert patients in 2016. We work closely with clinicians, researchers and other professionals to achieve the following aims:

Raise awareness about ongoing, chronic urinary tract infections
Challenge current tests which fail to diagnose a significant number of UTIs
Gain official recognition and formal treatment guidelines for chronic UTI
Enable swift diagnosis of chronic UTI in order to avoid any misdiagnoses of interstitial cystitis, painful bladder syndrome and urethral syndrome
Ensure effective specialist treatment for chronic UTI is available to all

UTI Health Alliance is a not-for-profit, US-based advocacy, outreach and education organisation that was created from the experiences of those living with recurrent and chronic UTI. The organisation aims to bring together women, professionals, and experts to shed light on Urinary Tract Infections - the most diagnosed outpatient infection in the United States. The UTI Health Alliance strives to make an impact and help patients on their own journeys, by providing a free resource download library, a supportive network, and most of all, hope.

Frequently Asked Questions

Q: What are the criteria for inclusion in this study?

A: Some criteria have been outlined that determine if an individual may participate in this particular study. Because this study aims to document the variations in patient experiences, restrictions are minimal and most participants who meet the baseline criteria listed above will be eligible. The best way to find out whether you are eligible is to complete the screening questionnaire. If you are excluded after completing the screening questionnaire, a list describing any exclusion criteria will be displayed on the screen or sent to you by email.

If a specific criterion listed does not apply to you, a combination of answers may have excluded you from this study. If you have additional questions, you can get in touch with the research team at research@globalutiproject.com.

Participation in or exclusion from the Bladder Biome Project 2023 do not exclude you from participating in the Global UTI Project.

Q: I have another health condition, can I participate?

A: Yes, participants with other health conditions are eligible. We recommend completing the screening questionnaire to determine if you qualify. It’s very important for the success of the study that participant answers are accurate, so please provide any information you feel may be relevant.

Q: Are there any geographic restrictions on participation?

A: No! Participants in all regions are welcome to participate - the more regions the better.

Q: If I am excluded from the study, can I request that my information be deleted?

A: Using a screening questionnaire of this type is a standard protocol for research and it has been approved by an ethics board. Your personal information and contact details will not be shared with any third parties. If you do not qualify for this study, the information you provide will be stored until data collection for the study is finished and will then be deleted. Should you make a request prior to the study being finished, your data will be deleted.

Where will the results of the study be published?

A: This study has been approved by The University of Reading (approval number: 2023-129-KF) and we aim to publish the results in a peer reviewed journal, as well as directly via the websites and social media channels of the alliance partners.

Through this project, we will do everything we can to raise awareness about the patient experience of recurrent and chronic UTI and the crucial need for more research funding.