International Registry of Congenital Portosystemic Shunt (IRCPSS)
The International Registry of Congenital Portosystemic Shunt (IRCPSS) is collecting health information from people globally who have a rare condition called Congenital Portosystemic Shunt (CPSS). In CPSS, blood from the gut doesn't go through the liver properly, which can lead to various health problems. Because the condition is rare and its effects vary greatly, doctors want to understand it better. This registry aims to centralise detailed health records and biological data. By bringing together experts from different fields, the study hopes to learn more about how common CPSS is, how it develops over time, why some people face more severe issues, and the underlying causes. This knowledge is crucial for providing better care and support to individuals with CPSS.
At a glance
What is this study about?
This study is called the International Registry of Congenital Portosystemic Shunt (IRCPSS). It focuses on a rare condition known as Congenital Portosystemic Shunt, often shortened to CPSS. In simple terms, CPSS means that some blood from your digestive system, instead of flowing fully through your liver to be filtered, bypasses it. Think of it like a shortcut in your bloodstream. When this happens, substances that would normally be processed by the liver can build up in the body, potentially causing various health problems.
Because CPSS is uncommon and can affect people very differently, it's currently hard for doctors to predict who will develop serious complications. Some people might have mild symptoms, while others could experience more significant health issues. This registry aims to collect detailed health information, including medical history and biological samples, from people with CPSS all around the world.
A large team of medical experts from various fields is working together on this project. By gathering and analysing this information globally, they hope to get a clearer picture of how many people have CPSS, how it progresses over time, what causes the different health problems, and why some individuals are more at risk. This deeper understanding is vital to improve diagnosis, treatment, and overall care for everyone with CPSS.
Key takeaways
- CPSS is a rare condition where blood bypasses the liver.
- The study aims to understand CPSS better through a global registry.
- Participation involves sharing medical data, not new treatments.
- Experts from around the world are collaborating.
- The goal is to improve future care for people with CPSS.
Who may be eligible?
To be included in this study, you must have a diagnosis of Congenital Portosystemic Shunt (CPSS). This means you were born with this specific condition where blood bypasses the liver.
You would not be able to join if your shunt (the bypassed blood vessel) developed later in life due to another medical problem, and you don't have evidence of being born with a shunt.
- I have been diagnosed with Congenital Portosystemic Shunt (CPSS).
- I was born with the shunt, rather than it developing later in life.
- I am open to sharing my existing medical information for research.
- I understand that this is an observational study, not a treatment trial.
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
This study involves gathering your existing medical information and possibly some biological samples, though the detailed description doesn't specify new appointments or treatments as part of the registry itself. It's about collecting data to understand the condition better, rather than testing a new treatment. The purpose is to combine information from many people with CPSS globally to learn more about the condition. The total duration of your involvement would depend on how long your medical information is followed within the registry, but it does not require you to undergo any specific intervention or attend extra visits beyond your usual medical care.
Potential risks and benefits
Locations (26)
- Yale University School of MedicineNew Haven, United States
- Lurie Children's HospitalChicago, United States
- Royal Children's Hospital MelbourneParkville, Australia
- Universitary Clinics Saint-Luc, UCLBrussels, Belgium
- The Hospital for Sick ChildrenToronto, Canada
- Beaujon University HospitalClichy, France
- Hôpital Bicêtre-Hôpitaux Universitaires Paris-Sud- Assistance Publique Hôpitaux de Paris.Le Kremlin-Bicêtre, France
- Hôpital NeckerParis, France
- Hannover Medical SchoolHanover, Germany
- Haunersche Kinderklinik - LMU MunichMunich, Germany
- University of TuebingenTübingen, Germany
- First Department of Pediatrics, Semmelweis UniversityBudapest, Hungary
+14 more sites — see the official record for the full list.
Common questions
What is Congenital Portosystemic Shunt (CPSS)?
It's a rare condition where some blood from your gut doesn't pass through your liver as it should, but instead bypasses it. This can lead to various health issues.
Why is this study important?
Because CPSS is rare and complex, doctors need more information to understand how it affects people, why some get serious complications, and how best to care for them.
Will I receive any new treatment if I join?
No, this is a registry, meaning it collects information from existing medical records. It's not a study that tests new medications or treatments.
Who is running this study?
A group of medical experts from different fields around the world are working together to gather and understand the information.
Will my personal details be kept private?
Yes, all your personal health information will be handled with strict confidentiality and privacy guidelines.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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