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.
एक नजर में
यह अध्ययन किस बारे में है?
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.
मुख्य निष्कर्ष
- 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.
कौन पात्र हो सकता है?
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.
क्या यह अध्ययन आपके लिए उपयुक्त हो सकता है?
यह देखने के लिए इन त्वरित प्रश्नों का उत्तर दें कि क्या आप पात्र हो सकते हैं। यह केवल एक मार्गदर्शिका है — अंतिम निर्णय शोध टीम द्वारा लिया जाता है।.
- 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.
भागीदारी में क्या शामिल है?
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.
संभावित जोखिम और लाभ
Locations (141)
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडऑरोरा, संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडवॉशिंगटन डी.सी., संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडगेन्सविल, संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडअटलांटा, संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडशिकागो, संयुक्त राज्य अमेरिका· वापस लिया गया
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडबोस्टन, संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडसेंट लुइस, संयुक्त राज्य अमेरिका· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडविंस्टन-सलेम, संयुक्त राज्य अमेरिका· वापस लिया गया
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडकोलंबस, संयुक्त राज्य अमेरिका· सक्रिय लेकिन भर्ती नहीं
- Clinical Trial Site 1सत्यापित पोस्टकोडवेस्टमीड, ऑस्ट्रेलिया· भर्ती
- Clinical Trial Site 2सत्यापित पोस्टकोडवेस्टमीड, ऑस्ट्रेलिया· भर्ती
- क्लिनिकल ट्रायल साइटसत्यापित पोस्टकोडCairns, Australia· भर्ती
सामान्य प्रश्न
What is atypical Hemolytic-Uremic Syndrome (aHUS)?
It's a very rare and serious kidney disease that can damage blood vessels.
क्या मुझे इस अध्ययन में नई दवा मिलेगी?
No, this study only collects information about your current medical care and treatments.
इस अध्ययन में कौन शामिल हो सकता है?
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.
अगर मैं अपना मन बदल लूँ तो क्या मैं अध्ययन छोड़ सकता हूँ?
Yes, you can withdraw from the study at any time without affecting your medical care.
और अधिक जानने के लिए कैसे पता करें
Alexion Pharmaceuticals, Inc. (Sponsor)
किसी अध्ययन में भाग लेने का निर्णय लेने से पहले हमेशा अपने जीपी या विशेषज्ञ से बात करें।.
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