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.
En un coup d'œil
De quoi parle cette étude ?
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.
Points clés
- 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.
Qui peut être éligible ?
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.
Cet étude pourrait-elle vous convenir ?
Répondez à ces questions rapides pour voir si vous êtes éligible. Ceci est un guide uniquement — l'équipe de recherche prend la décision finale.
- 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.
En quoi consiste la participation ?
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.
Risques et avantages potentiels
Locations (141)
- Clinical Trial SiteCode postal vérifiéAurora, États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéWashington D.C., États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéGainesville, États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéAtlanta, États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéChicago, États-Unis· Retiré
- Clinical Trial SiteCode postal vérifiéBoston, États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéSaint Louis, États-Unis· Recrutement
- Clinical Trial SiteCode postal vérifiéWinston-Salem, United States· Retiré
- Clinical Trial SiteCode postal vérifiéColumbus, États-Unis· Actif, mais pas en recrutement
- Clinical Trial Site 1Code postal vérifiéWestmead, Australia· Recrutement
- Clinical Trial Site 2Code postal vérifiéWestmead, Australia· Recrutement
- Clinical Trial SiteCode postal vérifiéCairns, Australia· Recrutement
Questions fréquentes
What is atypical Hemolytic-Uremic Syndrome (aHUS)?
It's a very rare and serious kidney disease that can damage blood vessels.
Will I get new medicine in this study?
No, this study only collects information about your current medical care and treatments.
Qui peut participer à cette étude ?
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.
Puis-je quitter l'étude si je change d'avis ?
Yes, you can withdraw from the study at any time without affecting your medical care.
Comment en savoir plus
Alexion Pharmaceuticals, Inc. (Sponsor)
Parlez toujours à votre médecin généraliste ou spécialiste avant de décider de participer à une étude.
Intéressé à participer ?
Discussion
Discussion communautaire
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