Atypical Hemolytic-Uremic Syndrome (aHUS) Registry
This study, called the Atypical Hemolytic-Uremic Syndrome (aHUS) Registry, is designed to collect important safety information after new medicines like eculizumab and ravulizumab have been approved and are being used by patients. It helps doctors understand how safe these treatments are in real-world use. The study also tracks how aHUS affects patients over time, regardless of whether they are on these specific treatments or not. It's open to people of all ages, including children, who have been diagnosed with aHUS. The main goal is to improve our understanding of aHUS and its treatments to help future patients.
Överblick
Vad handlar denna studie om?
This registry is a study for people with a rare kidney condition called atypical Hemolytic-Uremic Syndrome, or aHUS. When new medicines are approved, doctors need to keep learning how they work in real life. This study collects information on patients who are treated with two specific medicines, eculizumab or ravulizumab, to see how safe they are once they've been approved and are being used widely. This is called 'post-marketing safety data'.
But it's not just about these medicines. The study also collects details on how aHUS affects patients over time, no matter what treatment they are receiving, or even if they aren't on these particular medicines. This helps doctors and researchers understand the condition better and how it progresses in different people.
By gathering this information from many patients, researchers hope to get a clearer picture of aHUS and how best to manage it. This can lead to better care and understanding for everyone affected by this rare disease in the future.
Viktiga punkter
- It's a study about a rare kidney disease called aHUS.
- It collects information on how aHUS progresses and how safe certain medicines are.
- Participation involves sharing medical information, not new treatments.
- It's open to patients of all ages, including children.
- The goal is to improve understanding and care for aHUS patients.
Vem kan vara berättigad?
You might be able to join this study if you've been diagnosed with atypical Hemolytic-Uremic Syndrome (aHUS). This includes people of all ages, from young children to adults. It doesn't matter if doctors have found a specific genetic cause for your aHUS or not.
An important part of joining is being able to understand and sign a consent form. If you're under 18, your parent or legal guardian would sign for you, and you would also be asked if you're happy to take part.
You would not be able to join if your Hemolytic Uremic Syndrome (HUS) is only caused by a specific type of E. coli bacteria (Shiga Toxin producing E. coli). Also, if you or your guardian are unable to give written consent, then you would not be able to take part.
Kan denna studie passa dig?
Svara på dessa snabba frågor för att se om du kan vara berättigad. Detta är endast en vägledning — forskarteamet fattar det slutgiltiga beslutet.
- I have been diagnosed with atypical Hemolytic-Uremic Syndrome (aHUS).
- My HUS is not caused only by a specific E. coli infection.
- I (or my parent/guardian if I'm under 18) can understand and give written permission to take part.
- If I'm under 18, I am happy to take part myself.
Vad innebär deltagande?
This study is a registry, which means it mainly involves collecting information about your condition and treatment from your medical records. You would continue to receive your usual medical care from your own doctors. There are no specific study visits or extra medication given as part of this registry. Your treatment decisions would be made by you and your doctor as normal. The study would gather information over a period of time, tracking your health and any treatments you receive for aHUS.
Potentiella risker och fördelar
Locations (141)
- Klinisk PrövningsplatsVerifierat postnummerAurora, USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerWashington D.C., USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerGainesville, USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerAtlanta, USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerChicago, USA· Återkallad
- Klinisk PrövningsplatsVerifierat postnummerBoston, USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerSt Louis, USA· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerWinston-Salem, USA· Återkallad
- Klinisk PrövningsplatsVerifierat postnummerColumbus, USA· Aktiv men inte rekryterande
- Clinical Trial Site 1Verifierat postnummerWestmead, Australien· Rekrytering
- Clinical Trial Site 2Verifierat postnummerWestmead, Australien· Rekrytering
- Klinisk PrövningsplatsVerifierat postnummerCairns, Australia· Rekrytering
Vanliga frågor
What is atypical Hemolytic-Uremic Syndrome (aHUS)?
It's a very rare and serious kidney disease that can damage blood vessels.
Kommer jag att få ny medicin i denna studie?
No, this study only collects information about your current medical care and treatments.
Vem kan delta i denna studie?
People of all ages diagnosed with aHUS, as long as it's not caused by a specific E. coli infection.
What information will the study collect?
It will gather details about your aHUS, its progression, and any treatments you receive.
Kan jag lämna studien om jag ändrar mig?
Ja, du kan när som helst dra dig ur studien utan att det påverkar din medicinska vård.
Hur du får reda på mer
Alexion Pharmaceuticals, Inc. (Sponsor)
Prata alltid med din läkare eller specialist innan du bestämmer dig för att delta i en studie.
Intresserad av att delta?
Diskussion
Gemenskapsdiskussion
Drivs av vårt forum på community.patient.info. Var vänlig och respektfull — detta är inte medicinsk rådgivning.