--- title: aHUS Observational Long Term Follow-Up nct_id: NCT01522170 overall_status: TERMINATED sponsor: Alexion Pharmaceuticals, Inc. study_type: OBSERVATIONAL primary_condition: Atypical Hemolytic Uremic Syndrome countries: United States, Australia, Austria, Belgium, Canada, France, Germany, Italy, Netherlands, Sweden, Switzerland, United Kingdom canonical_url: "https://parkinsonspathways.com/agent/trials/NCT01522170.md" clinicaltrials_gov: "https://clinicaltrials.gov/study/NCT01522170" ct_last_update_post_date: 2017-02-24 last_seen_at: "2026-05-12T06:18:50.485Z" source: ClinicalTrials.gov (mirrored, no enrichment) --- # aHUS Observational Long Term Follow-Up **Official Title:** An Observational, Multi-Center, Multi-National, Long Term Follow-Up Study of Atypical Hemolytic Uremic Syndrome (aHUS) Patients Treated With Eculizumab in a Prior Clinical Study **NCT ID:** [NCT01522170](https://clinicaltrials.gov/study/NCT01522170) ## Key Facts - **Status:** TERMINATED - **Why Stopped:** Remaining patients were offered a similar observational study (Alexion M11-001) to allow for robust, high quality data collection in a larger, single database - **Study Type:** OBSERVATIONAL - **Target Enrollment:** 94 - **Lead Sponsor:** Alexion Pharmaceuticals, Inc. - **Conditions:** Atypical Hemolytic Uremic Syndrome - **Start Date:** 2012-03 - **Completion Date:** 2017-01 - **CT.gov Last Update:** 2017-02-24 ## Brief Summary 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. ## Eligibility - **Sex:** ALL - **Healthy Volunteers:** No ``` Inclusion Criteria: * 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. Exclusion Criteria: * Not applicable. ``` ## Primary Outcomes - **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 Outcomes - **Duration of response, change over time of value for platelets, LDH, eGFR, Hgb, TMA intervention** _(time frame: 5 Years)_ ## Locations (56) - Emory Healthcare - Children's Center, Atlanta, Georgia, United States - Dunwoody Pediatrics & Children's Healthcare of Atlanta, Dunwoody, Georgia, United States - Fort Wayne Medical Oncology and Hematology, Fort Wayne, Indiana, United States - 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 - Le Kremlin Bicetre Hospital, Nephrology Unit, Le Kremlin-Bicêtre, France - CHRU de Lille-Hopital A.Calmette, Lille, France - Hôpital Edouard Herriot, Lyon, France - Hopital de la Timone Enfants, Unité de Néphrologie, Marseille, France - CHU Hotel Dieu, Nantes, France - Le Centre Hospitalier Universitaire de Nice, Nice, France - Centre Hospitalier Regional de la Source, Service de nephrologie/hemodialyse, Orléans, France - Hopital Robert-Debré, Service de Néphrologie Pédiatrique, Paris, France - Hopital Tenon, Paris, France - Centre Hospitalier Inter-Communal de Cornouaille, Quimper, France - CHU-CH Charles Nicolle Pavillon de Pédiatrie, Rouen, France - Hôpital de Bois Guillaume CHU de Rouen, Rouen, France - CHU de Saint-Etienne, Saint-Priest-en-Jarez, France - Nouvel Hopital Civil, Strasbourg, France - CHRU de Tours, Tours, France - Universitaetsklinikum Aachen Klinik fuer Nieren- und Hochdruckkrankheiten, Aachen, Germany - Hannover University Clinic, Hanover, Germany - Universitaet Heidelberg, Heidelberg, Germany - A.O. Papa Giovanni XXIII, Bergamo, Italy - Azienda Ospedaliero-Universitaria Careggi, Florence, Italy - Istituto Giannina Gaslini, Genova, Italy - Fondazione IRCCS Ca Granda, Ospedale Maggiore Policlinico Maggiore Policlinico, Milan, Italy - Ospedale dei Bambini G. di Cristina, Palermo, Italy - AMC Medical Research B.V., Amsterdam, Netherlands - Radboud University Nijmegen Medical Centre Nijmegen, Nijmegen, Netherlands - Nephrology Clinic, Karolinska University Hospital, Stockholm, Sweden - INSELSPITAL Universitaetsklinik fuer Kinderheilkunde Kindernephrologie, Bern, Switzerland - Royal Devon & Exeter NHS Foundation Trust, Exeter, United Kingdom - Gartnavel General Hospital, Glasgow, United Kingdom - The Newcastle upon Tyne Hospitals NHS, Newcastle upon Tyne, United Kingdom - City Hospital, Nottingham University Hospitals, NHS Trust, Nottingham, United Kingdom ## Recent Field Changes (last 30 days) - `status.overallStatus` — added _(2026-05-12)_ - `status.whyStopped` — added _(2026-05-12)_ - `status.primaryCompletionDate` — added _(2026-05-12)_ - `status.completionDate` — added _(2026-05-12)_ - `status.lastUpdatePostDate` — added _(2026-05-12)_ - `design.enrollmentCount` — added _(2026-05-12)_ - `eligibility.criteria` — added _(2026-05-12)_ - `eligibility.sex` — added _(2026-05-12)_ - `outcomes.primary` — added _(2026-05-12)_ - `outcomes.secondary` — added _(2026-05-12)_ - `sponsor.lead` — added _(2026-05-12)_ - `results.hasResults` — added _(2026-05-12)_ - `locations.emory healthcare - children's center|atlanta|georgia|united states` — added _(2026-05-12)_ - `locations.dunwoody pediatrics & children's healthcare of atlanta|dunwoody|georgia|united states` — added _(2026-05-12)_ - `locations.fort wayne medical oncology and hematology|fort wayne|indiana|united states` — added _(2026-05-12)_ - `locations.|fort wayne|indiana|united states` — added _(2026-05-12)_ - `locations.boston children's hospital|boston|massachusetts|united states` — added _(2026-05-12)_ - `locations.henry ford health system|detroit|michigan|united states` — added _(2026-05-12)_ - `locations.hudson valley oncology hematology|hawthorne|new york|united states` — added _(2026-05-12)_ - `locations.weill cornell medical college|new york|new york|united states` — added _(2026-05-12)_ - `locations.children's hospital at montefiore|the bronx|new york|united states` — added _(2026-05-12)_ - `locations.cincinnati children's hospital|cincinnati|ohio|united states` — added _(2026-05-12)_ - `locations.arthur james cancer hospital|columbus|ohio|united states` — added _(2026-05-12)_ - `locations.driscoll children's hospital|corpus christi|texas|united states` — added _(2026-05-12)_ - `locations.the methodist hospital research institute|houston|texas|united states` — added _(2026-05-12)_ - `locations.seattle children's hospital|seattle|washington|united states` — added _(2026-05-12)_ - `locations.providence sacred heart medical center & children's hospital|spokane|washington|united states` — added _(2026-05-12)_ - `locations.fox valley hematology|oshkosh|wisconsin|united states` — added _(2026-05-12)_ - `locations.royal adelaide hospital|north tce. adelaide||australia` — added _(2026-05-12)_ - `locations.universitatsklinik fur innere medizin medizinische universitat graz|graz||austria` — added _(2026-05-12)_ - `locations.medizinische universitaet innsbruck|innsbruck||austria` — added _(2026-05-12)_ - `locations.uz gent dienst nefrologie|ghent||belgium` — added _(2026-05-12)_ - `locations.chu sart tilman|liège||belgium` — added _(2026-05-12)_ - `locations.centre hospitalier universitaire (chu) sainte-justine|montreal||canada` — added _(2026-05-12)_ - `locations.the hospital for sick children|toronto||canada` — added _(2026-05-12)_ - `locations.centre hospitalier universitaire pellegrin, service de nephrologie transplantation dialyse|bordeaux||france` — added _(2026-05-12)_ - `locations.chru de caen|caen||france` — added _(2026-05-12)_ - `locations.le kremlin bicetre hospital, nephrology unit|le kremlin-bicêtre||france` — added _(2026-05-12)_ - `locations.chru de lille-hopital a.calmette|lille||france` — added _(2026-05-12)_ - `locations.hôpital edouard herriot|lyon||france` — added _(2026-05-12)_ - `locations.hopital de la timone enfants, unité de néphrologie|marseille||france` — added _(2026-05-12)_ - `locations.chu hotel dieu|nantes||france` — added _(2026-05-12)_ - `locations.le centre hospitalier universitaire de nice|nice||france` — added _(2026-05-12)_ - `locations.centre hospitalier regional de la source, service de nephrologie/hemodialyse|orléans||france` — added _(2026-05-12)_ - `locations.hopital robert-debré, service de néphrologie pédiatrique|paris||france` — added _(2026-05-12)_ - `locations.hopital tenon|paris||france` — added _(2026-05-12)_ - `locations.centre hospitalier inter-communal de cornouaille|quimper||france` — added _(2026-05-12)_ - `locations.chu-ch charles nicolle pavillon de pédiatrie|rouen||france` — added _(2026-05-12)_ - `locations.hôpital de bois guillaume chu de rouen|rouen||france` — added _(2026-05-12)_ - `locations.chu de saint-etienne|saint-priest-en-jarez||france` — added _(2026-05-12)_ --- *Canonical: https://parkinsonspathways.com/agent/trials/NCT01522170.md* *Source data (authoritative): https://clinicaltrials.gov/study/NCT01522170* *This page is a raw mirror with no AI summary, no editorial enrichment, and no Parkinson's-specific filtering.*