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.
Em resumo
Sobre o que é este estudo?
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.
Pontos principais
- 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.
Quem pode ser elegível?
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.
Este estudo pode ser adequado para você?
Responda a estas perguntas rápidas para ver se você pode ser elegível. Este é apenas um guia — a decisão final é da equipe de pesquisa.
- 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.
O que envolve a participação?
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.
Riscos e benefícios potenciais
Locations (141)
- Clinical Trial SiteCódigo postal verificadoAurora, Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoWashington D.C., Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoGainesville, Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoAtlanta, Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoChicago, Estados Unidos· Retirado
- Clinical Trial SiteCódigo postal verificadoBoston, Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoSt Louis, Estados Unidos· Recrutamento
- Clinical Trial SiteCódigo postal verificadoWinston-Salem, Estados Unidos· Retirado
- Clinical Trial SiteCódigo postal verificadoColumbus, Estados Unidos· Ativo, mas não recrutando
- Clinical Trial Site 1Código postal verificadoWestmead, Australia· Recrutamento
- Clinical Trial Site 2Código postal verificadoWestmead, Australia· Recrutamento
- Clinical Trial SiteCódigo postal verificadoCairns, Australia· Recrutamento
Perguntas frequentes
What is atypical Hemolytic-Uremic Syndrome (aHUS)?
It's a very rare and serious kidney disease that can damage blood vessels.
Receberei um novo medicamento neste estudo?
No, this study only collects information about your current medical care and treatments.
Quem pode participar deste estudo?
People of all ages diagnosed with aHUS, as long as it's not caused by a specific E. coli infection.
Que informações o estudo irá coletar?
It will gather details about your aHUS, its progression, and any treatments you receive.
Posso sair do estudo se mudar de ideia?
Sim, você pode se retirar do estudo a qualquer momento sem afetar seu atendimento médico.
Como saber mais
Alexion Pharmaceuticals, Inc. (Sponsor)
Sempre consulte seu médico ou especialista antes de decidir participar de um estudo.
Interessado em participar?
Discussão
Discussão da comunidade
Desenvolvido pelo nosso fórum em community.patient.info. Por favor, seja respeitoso — isto não é um conselho médico.