aHUS Observational Long Term Follow-Up

Stopped early

Conditions studied: Atypical Hemolytic Uremic Syndrome

In brief

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.

Key facts

Study ID

NCT01522170

Run by

Alexion Pharmaceuticals, Inc.

People needed

94

Starts

2012-03-01

Expected to finish

2017-01-01

Last updated by the study team

2017-02-24

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• Not applicable.

Where it is running

• Dunwoody Pediatrics & Children's Healthcare of Atlanta — Dunwoody, Georgia, United States
• Fort Wayne Medical Oncology and Hematology — Fort Wayne, Indiana, United States
• Study site — Fort Wayne, Indiana, United States
• Boston Children's Hospital — Boston, Massachusetts, United States
• Henry Ford Health System — Detroit, Michigan, United States
• Hudson Valley Oncology Hematology — Hawthorne, New York, United States
• Weill Cornell Medical College — New York, New York, United States
• Children's Hospital at Montefiore — The Bronx, New York, United States
• Cincinnati Children's Hospital — Cincinnati, Ohio, United States
• Arthur James Cancer Hospital — Columbus, Ohio, United States
• Driscoll Children's Hospital — Corpus Christi, Texas, United States
• The Methodist Hospital Research Institute — Houston, Texas, United States
• Seattle Children's Hospital — Seattle, Washington, United States
• Providence Sacred Heart Medical Center & Children's Hospital — Spokane, Washington, United States
• Fox Valley Hematology — Oshkosh, Wisconsin, United States
• Royal Adelaide Hospital — North Tce. Adelaide, Australia
• Universitatsklinik fur Innere Medizin Medizinische Universitat Graz — Graz, Austria
• Medizinische Universitaet Innsbruck — Innsbruck, Austria
• UZ Gent Dienst nefrologie — Ghent, Belgium
• Chu Sart Tilman — Liège, Belgium
• Centre Hospitalier Universitaire (CHU) Sainte-Justine — Montreal, Canada
• The Hospital for Sick Children — Toronto, Canada
• Centre Hospitalier Universitaire Pellegrin, Service de Nephrologie Transplantation Dialyse — Bordeaux, France
• CHRU de Caen — Caen, France
• Emory Healthcare - Children's Center — Atlanta, Georgia, United States

Full record on ClinicalTrials.gov

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