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ClinicalTrials.gov Identifier: NCT01522170
(Remaining patients were offered a similar observational study (Alexion M11-001) to allow for robust, high quality data collection in a larger, single database)
There is growing but limited information on the long term clinical status of aHUS patients who have previously received or are continuing to receive treatment with eculizumab. This study is designed to collect clinical data that will provide insight into the long-term outcomes of patients with aHUS.
TMA complication-free survival [ Time Frame: 5 Years ]
Assess the long term efficacy of eculizumab in patients with aHUS who have previously participated in an eculizumab clinical study.
Secondary Outcome Measures
Duration of response, change over time of value for platelets, LDH, eGFR, Hgb, TMA intervention [ Time Frame: 5 Years ]
Assess the long term safety of eculizumab in patients with aHUS who have previously participated in an eculizumab clinical study by collecting data on serious adverse events and targeted adverse events.
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study:
Child, Adult, Senior
Sexes Eligible for Study:
Accepts Healthy Volunteers:
Male and female aHUS, including minors, who previously participated in eculizumab clinical trials.
aHUS patients who participated in any one of the aHUS-eculizumab clinical studies.
aHUS patients or legal representative who are able and willing to given written informed consent for their study information to be collected and retained in a database.