Ignite Creation Date:
2025-12-25 @ 4:24 AM
Ignite Modification Date:
2025-12-26 @ 3:27 AM
Study NCT ID:
NCT03553420
Status:
RECRUITING
Last Update Posted:
2025-12-02
First Post:
2018-03-14
Is NOT Gene Therapy:
False
Has Adverse Events:
False
Brief Title:
Registry for Patients With Lipodystrophy
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24', 'removedCountries': ['Cyprus', 'Poland']}, 'conditionBrowseModule': {'meshes': [{'id': 'D052496', 'term': 'Lipodystrophy, Familial Partial'}, {'id': 'D008060', 'term': 'Lipodystrophy'}], 'ancestors': [{'id': 'D000083083', 'term': 'Laminopathies'}, {'id': 'D030342', 'term': 'Genetic Diseases, Inborn'}, {'id': 'D009358', 'term': 'Congenital, Hereditary, and Neonatal Diseases and Abnormalities'}, {'id': 'D012875', 'term': 'Skin Diseases, Metabolic'}, {'id': 'D012871', 'term': 'Skin Diseases'}, {'id': 'D017437', 'term': 'Skin and Connective Tissue Diseases'}, {'id': 'D008052', 'term': 'Lipid Metabolism, Inborn Errors'}, {'id': 'D052439', 'term': 'Lipid Metabolism Disorders'}, {'id': 'D008659', 'term': 'Metabolic Diseases'}, {'id': 'D009750', 'term': 'Nutritional and Metabolic Diseases'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'PROSPECTIVE', 'observationalModel': 'CASE_ONLY'}, 'enrollmentInfo': {'type': 'ESTIMATED', 'count': 5000}, 'targetDuration': '50 Years', 'patientRegistry': True}, 'statusModule': {'overallStatus': 'RECRUITING', 'startDateStruct': {'date': '2017-12-16', 'type': 'ACTUAL'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2025-11', 'completionDateStruct': {'date': '2068-01', 'type': 'ESTIMATED'}, 'lastUpdateSubmitDate': '2025-11-24', 'studyFirstSubmitDate': '2018-03-14', 'studyFirstSubmitQcDate': '2018-06-11', 'lastUpdatePostDateStruct': {'date': '2025-12-02', 'type': 'ESTIMATED'}, 'studyFirstPostDateStruct': {'date': '2018-06-12', 'type': 'ACTUAL'}, 'primaryCompletionDateStruct': {'date': '2068-01', 'type': 'ESTIMATED'}}, 'outcomesModule': {'primaryOutcomes': [{'measure': 'Age at death', 'timeFrame': 'after 20 years', 'description': 'patients are followed regularly, age at death (years) will be documented'}], 'secondaryOutcomes': [{'measure': 'change in somatic comorbidities under standard treatment', 'timeFrame': 'yearly for 50 years', 'description': 'standardized physical examination, laboratory and instrument based tests'}, {'measure': 'genotype-phenotype correlation for patients with familial lipodystrophy', 'timeFrame': 'every 5 years for 50 years', 'description': 'molecular genetic results will be compared to results from standardized physical examination, laboratory and instrument based tests'}, {'measure': 'age at onset of metabolic complications', 'timeFrame': 'yearly for 50 years', 'description': 'metabolic complications will be assessed via standardized physical examination, laboratory and instrument based tests'}, {'measure': 'age at onset orthopedic complications', 'timeFrame': 'yearly for 50 years', 'description': 'orthopedic complications will be assessed via standardized physical examination, laboratory and instrument based tests'}, {'measure': 'age at onset neuromuscular complications', 'timeFrame': 'yearly for 50 years', 'description': 'neuromuscular complications will be assessed via standardized physical examination, laboratory and instrument based tests'}]}, 'oversightModule': {'oversightHasDmc': False, 'isFdaRegulatedDrug': False, 'isFdaRegulatedDevice': False}, 'conditionsModule': {'keywords': ['lipodystrophy'], 'conditions': ['Lipodystrophy Acquired', 'Lipodystrophy Congenital']}, 'referencesModule': {'references': [{'pmid': '31941540', 'type': 'BACKGROUND', 'citation': "von Schnurbein J, Adams C, Akinci B, Ceccarini G, D'Apice MR, Gambineri A, Hennekam RCM, Jeru I, Lattanzi G, Miehle K, Nagel G, Novelli G, Santini F, Santos Silva E, Savage DB, Sbraccia P, Schaaf J, Sorkina E, Tanteles G, Vantyghem MC, Vatier C, Vigouroux C, Vorona E, Araujo-Vilar D, Wabitsch M. European lipodystrophy registry: background and structure. Orphanet J Rare Dis. 2020 Jan 15;15(1):17. doi: 10.1186/s13023-020-1295-y."}]}, 'descriptionModule': {'briefSummary': 'Given the lack of knowledge on lipodystrophies, the medical and social responsibility for the persons affected by it calls for the monitoring of the progression over long periods of time. Sensible clinical and basic research into rare diseases such as lipodystrophy is only possible in multi-location networks with sufficient case numbers. Also, reliable information on the incidence of certain manifestation patterns, health status, etc. is of utmost importance for health care and health policy in this rare disease.\n\nTherefore, the European Consortium of Lipodystrophies (ECLip), an association of European experts on lipodystrophy, has launched a registry (OSSE) for lipodystrophies which is committed to help to improve the research conditions by consolidating this kind of information in a registry.', 'detailedDescription': 'As lipodystrophies are rare diseases subdivided into yet rarer sub-groups, research in this field requires international co-operation.\n\nThe European Consortium of Lipodystrophy (ECLip) consists of an association of European experts in the field of lipodystrophy. It has set up a Registry Board to implement a registry for patients with lipodystrophy using the Open Source Software OSSE (Open Source Registry System for Rare Diseases in the EU), which is a web based platform focused on a federated approach that allows to perform distributed searches which are designed to comply data protection requirements and preserve data sovereignty. To ensure data protection, medical and identifying data will be stored on two different servers both run by the Institute for Epidemiology and Medical Biometry of the University of Ulm.\n\nMedical centers from all over the world where patients are treated with lipodystrophy are invited to join the ECLip Registry and to become ECLip Registry members. Upon registration, they can enter patient data after they have obtained local ethic committee permission and the patient in question has given written consent to this. Data entry is done at the individual locations via a web-based user interface. Identifying data are recorded directly into the identity management system. Communication between the identity management and the OSSE registry happens via a web browser.\n\nThe aim of the patient registry is to compile data on the natural history of each different sub-group of lipodystrophies, their comorbidities, treatment options used and medical and quality of life out-come for the patients. For this, the following data retrieved from regular patient visits are collected:\n\n* Precise diagnosis including moleculargenetic results\n* Clinical presentation and comorbidities\n* Laboratory changes and results of diagnostic procedures\n* Natural course of the disease including age at onset of disease and comorbidities\n* Family history\n\nResearch within this registry can be performed by participating clinicians/researchers and third parties after a research proposal has be accepted by the responsible committee of the ECLip. The registry aims to answer the following questions\n\n* new insights into the pathophysiology of lipodystrophy\n* improve therapeutic options for the patients\n* compile information material for patients, families and relevant professionals'}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['CHILD', 'ADULT', 'OLDER_ADULT'], 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': 'all patients with lipodystrophy not due to anti-retroviral drugs presenting to a participating center might be entered', 'healthyVolunteers': False, 'eligibilityCriteria': 'Inclusion Criteria:\n\n* lipodystrophy\n\nExclusion Criteria:\n\n* lipodystrophy due to anti-retroviral drugs'}, 'identificationModule': {'nctId': 'NCT03553420', 'acronym': 'ECLip Registry', 'briefTitle': 'Registry for Patients With Lipodystrophy', 'organization': {'class': 'OTHER', 'fullName': 'University of Ulm'}, 'officialTitle': 'Osse Registry for Patients With Lipodystrophy Run by the European Consortium of Lipodystrophies (ECLip)', 'orgStudyIdInfo': {'id': 'ECLip Registry'}}, 'contactsLocationsModule': {'locations': [{'city': 'Vienna', 'status': 'RECRUITING', 'country': 'Austria', 'contacts': [{'name': 'Thomas Scherer, M.D.', 'role': 'CONTACT', 'email': 'thomas.scherer@meduniwien.ac.at'}, {'name': 'Marianna Beghini, M.D.', 'role': 'CONTACT', 'email': 'marianna.beghini@meduniwien.ac.at'}], 'facility': 'Medical University of Vienna', 'geoPoint': {'lat': 48.20849, 'lon': 16.37208}}, {'city': 'Lille', 'status': 'RECRUITING', 'country': 'France', 'contacts': [{'name': 'Marie-Christine Vantyghem, Prof.', 'role': 'CONTACT', 'email': 'marie-christine.vantyghem@chru-lille.fr'}, {'name': 'Géraldine Lavergne', 'role': 'SUB_INVESTIGATOR'}, {'name': 'Anne-Sophie Paranthoen', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Lille University', 'geoPoint': {'lat': 50.63391, 'lon': 3.05512}}, {'city': 'Paris', 'status': 'RECRUITING', 'country': 'France', 'contacts': [{'name': 'Elise Bismuth, Dr.', 'role': 'CONTACT', 'email': 'elise.bismuth@aphp.fr'}], 'facility': 'AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré', 'geoPoint': {'lat': 48.85341, 'lon': 2.3488}}, {'city': 'Paris', 'status': 'RECRUITING', 'country': 'France', 'contacts': [{'name': 'Camille Vatier, Dr.', 'role': 'CONTACT', 'email': 'camille.vatier@aphp.fr'}, {'name': 'Corinne Vigouroux, Prof. Dr.', 'role': 'CONTACT', 'email': 'corinne.vigouroux@inserm.fr'}, {'name': 'Isabelle Jeru, Dr', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Pierre et Marie Curie School of Medicine, Sorbonne University', 'geoPoint': {'lat': 48.85341, 'lon': 2.3488}}, {'city': 'Hanover', 'status': 'RECRUITING', 'country': 'Germany', 'contacts': [{'name': 'Jantje Weiskorn, Dr.', 'role': 'CONTACT', 'email': 'weiskorn@hka.de'}], 'facility': 'Kinder-und Jugendkrankenhaus AUF DER BULT', 'geoPoint': {'lat': 52.37052, 'lon': 9.73322}}, {'city': 'Leipzig', 'status': 'RECRUITING', 'country': 'Germany', 'contacts': [{'name': 'Konstanze Miehle, Dr.', 'role': 'CONTACT', 'email': 'Konstanze.Miehle@medizin.uni-leipzig.de'}, {'name': 'Michael Stumvoll, Prof. Dr.', 'role': 'PRINCIPAL_INVESTIGATOR'}, {'name': 'Mathias Faßhauer, Prof. Dr.', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig', 'geoPoint': {'lat': 51.33962, 'lon': 12.37129}}, {'zip': '48149', 'city': 'Münster', 'status': 'RECRUITING', 'country': 'Germany', 'contacts': [{'name': 'Hartmut Schmidt, Prof.', 'role': 'CONTACT', 'email': 'hepar@ukmuenster.de'}, {'name': 'Elena Vorona, Dr. med.', 'role': 'CONTACT', 'email': 'Elena.Vorona@ukmuenster.de'}], 'facility': 'Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster', 'geoPoint': {'lat': 51.96236, 'lon': 7.62571}}, {'zip': '89075', 'city': 'Ulm', 'status': 'RECRUITING', 'country': 'Germany', 'contacts': [{'name': 'Martin Wabitsch, Prof. Dr.', 'role': 'CONTACT', 'email': 'martin.wabitsch@uniklinik-ulm.de', 'phone': '0049 731 500', 'phoneExt': '57401'}, {'name': 'Julia von Schnurbein, Dr. med.', 'role': 'CONTACT', 'email': 'julia.schnurbein@uniklinik-ulm.de', 'phone': '0049 731 500', 'phoneExt': '57401'}, {'name': 'Martin Wabitsch, Prof. Dr.', 'role': 'PRINCIPAL_INVESTIGATOR'}, {'name': 'Julia von Schnurbein, Dr.', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic', 'geoPoint': {'lat': 48.39841, 'lon': 9.99155}}, {'city': 'Athens', 'status': 'RECRUITING', 'country': 'Greece', 'contacts': [{'name': 'Alexandraki, Prof.', 'role': 'CONTACT', 'email': 'alexandrakik@gmail.com'}, {'name': 'Spyroglou, Prof.', 'role': 'CONTACT', 'email': 'aspyroglou@yahoo.com'}], 'facility': 'National and Kapodistrian University of Athens', 'geoPoint': {'lat': 37.98376, 'lon': 23.72784}}, {'city': 'Athens', 'status': 'RECRUITING', 'country': 'Greece', 'contacts': [{'name': 'Vaia Lambadiari, Prof.', 'role': 'CONTACT', 'email': 'vlambadiari@gmail.com'}], 'facility': 'Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital', 'geoPoint': {'lat': 37.98376, 'lon': 23.72784}}, {'city': 'Szeged', 'status': 'RECRUITING', 'country': 'Hungary', 'contacts': [{'name': 'Eva Csajbok, Dr.', 'role': 'CONTACT', 'email': 'ecsajbok@yahoo.com'}], 'facility': 'University of Szeged, Department of Internal Medicine', 'geoPoint': {'lat': 46.253, 'lon': 20.14824}}, {'city': 'Bologna', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Alessandra Gambineri, Ass. Prof.', 'role': 'CONTACT', 'email': 'alessandra.gambineri@aosp.bo.it'}, {'name': 'Giovanna Lattanzi', 'role': 'CONTACT', 'email': 'lattanzi@area.bo.cnr.it'}, {'name': 'Carolina Cecchetti', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna', 'geoPoint': {'lat': 44.49381, 'lon': 11.33875}}, {'city': 'Milan', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Giulia Rodari, Dr.', 'role': 'CONTACT', 'email': 'giulia.rodari@policlinico.mi.it'}], 'facility': 'Policlinic University Hospital of Milan', 'geoPoint': {'lat': 45.46427, 'lon': 9.18951}}, {'city': 'Novara', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Flavia Prodam, Dr', 'role': 'CONTACT', 'email': 'flavia.prodam@med.uniupo.it'}, {'name': 'Gianluca Aimaretti, Prof', 'role': 'CONTACT', 'email': 'gianluca.aimaretti@med.uniupo.it'}, {'name': 'Tommaso Daffara, Dr', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Universita del piemonte Orientale', 'geoPoint': {'lat': 45.44694, 'lon': 8.62118}}, {'city': 'Palermo', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Silvio Buscemi, Prof.', 'role': 'CONTACT', 'email': 'silvio.buscemi@unipa.it'}], 'facility': 'Palermo University', 'geoPoint': {'lat': 38.1166, 'lon': 13.3636}}, {'city': 'Pisa', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Giovanni Ceccarini, Prof. Dr.', 'role': 'CONTACT', 'email': 'giovanni.ceccarini@unipi.it'}, {'name': 'Ferruccio Santini, Prof. Dr.', 'role': 'CONTACT', 'email': 'ferruccio.santini@med.unipi.it', 'phone': '+39 050 544', 'phoneExt': '723'}, {'name': 'Federica Ferrari, Dott.ssa', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Endocrine Unit of University Hospital of Pisa', 'geoPoint': {'lat': 43.70853, 'lon': 10.4036}}, {'city': 'Roma', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Giusepe Novelli, Prof', 'role': 'CONTACT', 'email': 'novelli@med.uniroma2.it'}, {'name': "Maria Rosaria D'Apice, Dr", 'role': 'CONTACT', 'email': 'd.apice@med.uniroma2.it'}, {'name': 'Paolo Sbraccia, Prof', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Tor Vergata University - Policlinico of Tor Vergata', 'geoPoint': {'lat': 44.99364, 'lon': 11.10642}}, {'city': 'Amsterdam', 'status': 'RECRUITING', 'country': 'Netherlands', 'contacts': [{'name': 'Kleinendorst Lotte, Dr.', 'role': 'CONTACT', 'email': 'l.kleinendorst@amsterdamumc.nl'}, {'name': 'Marjoleine Broekema, Dr.', 'role': 'CONTACT', 'email': 'm.broekema@amsterdamumc.nl'}], 'facility': 'Academic Medical Center, University of Amsterdam', 'geoPoint': {'lat': 52.37403, 'lon': 4.88969}}, {'city': 'Porto', 'status': 'RECRUITING', 'country': 'Portugal', 'contacts': [{'name': 'Ermelinda Santos Silva, Prof. Dra', 'role': 'CONTACT', 'email': 'u20868@chporto.min-saude.pt'}], 'facility': 'Abel Salazar Biomedical Sciences Institute - University of Porto', 'geoPoint': {'lat': 41.1485, 'lon': -8.61097}}, {'city': 'Bucharest', 'status': 'RECRUITING', 'country': 'Romania', 'contacts': [{'name': 'Iuliana Gherlan', 'role': 'CONTACT', 'email': 'iuliana.gherlan77@gmail.com'}], 'facility': 'C. I. Parhon National Institute of Endocrinology, Bucharest, Romania', 'geoPoint': {'lat': 44.43225, 'lon': 26.10626}}, {'city': 'Moscow', 'status': 'RECRUITING', 'country': 'Russia', 'contacts': [{'name': 'Marina Shestakova, MD', 'role': 'CONTACT', 'email': 'shestakova.mv@gmail.com'}], 'facility': 'Endocrinology Research Centre', 'geoPoint': {'lat': 55.75204, 'lon': 37.61781}}, {'city': 'Ljubljana', 'status': 'RECRUITING', 'country': 'Slovenia', 'contacts': [{'name': 'Karin Writzl, Dr.', 'role': 'CONTACT', 'email': 'karinwritzl@gmail.com', 'phone': '003861522', 'phoneExt': '6031'}, {'name': 'Iztok Stotl, Dr', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'University Medical Center Ljubljana - Clinical Institute of Medical Genetics', 'geoPoint': {'lat': 46.05108, 'lon': 14.50513}}, {'city': 'Santiago de Compostela', 'status': 'RECRUITING', 'country': 'Spain', 'contacts': [{'name': 'David Araujo-Vilar, Prof. Dr.', 'role': 'CONTACT', 'email': 'david.araujo@usc.es'}, {'name': 'Antía Fernández Pombo', 'role': 'CONTACT', 'email': 'antia.fernandez.pombo@rai.usc.es'}], 'facility': 'Santiago de Compostela University', 'geoPoint': {'lat': 42.88052, 'lon': -8.54569}}, {'city': 'Sankt Gallen', 'status': 'RECRUITING', 'country': 'Switzerland', 'contacts': [{'name': 'Katrin Heldt, MD', 'role': 'CONTACT', 'email': 'katrin.heldt@friendlydocs.ch'}], 'facility': 'Stoffwechselzentrum friendlydocs', 'geoPoint': {'lat': 47.42391, 'lon': 9.37477}}, {'city': 'Taipei', 'status': 'RECRUITING', 'country': 'Taiwan', 'contacts': [{'name': 'Ni-Chung Lee, Dr.', 'role': 'CONTACT', 'email': 'ncleentu@ntu.edu.tw'}], 'facility': 'National Taiwan University Hospital', 'geoPoint': {'lat': 25.05306, 'lon': 121.52639}}, {'city': 'Istanbul', 'status': 'RECRUITING', 'country': 'Turkey (Türkiye)', 'contacts': [{'name': 'Belma Haliloglu, Prof.', 'role': 'CONTACT', 'email': 'belmahaliloglu26@hotmail.com'}], 'facility': 'Marmara University, Pediatric Endocrinology and Diabetes', 'geoPoint': {'lat': 41.01384, 'lon': 28.94966}}, {'city': 'Izmir', 'status': 'RECRUITING', 'country': 'Turkey (Türkiye)', 'contacts': [{'name': 'Baris Akinci', 'role': 'CONTACT', 'email': 'barisakincimd@gmail.com'}], 'facility': 'Dokuz Eylul University School of Medicine', 'geoPoint': {'lat': 38.41273, 'lon': 27.13838}}, {'city': 'Cambridge', 'status': 'RECRUITING', 'country': 'United Kingdom', 'contacts': [{'name': 'David Savage, Prof.', 'role': 'CONTACT', 'email': 'dbs23@medschl.cam.ac.uk'}, {'name': 'Claire Adams', 'role': 'CONTACT', 'email': 'ca337@medschl.cam.ac.uk'}], 'facility': 'University of Cambridge Metabolic Research Laboratories', 'geoPoint': {'lat': 52.2, 'lon': 0.11667}}], 'centralContacts': [{'name': 'Julia von Schnurbein, Dr.', 'role': 'CONTACT', 'email': 'julia.schnurbein@uniklinik-ulm.de', 'phone': '0049 731 500', 'phoneExt': '57401'}, {'name': 'Martin Wabitsch, Prof. Dr.', 'role': 'CONTACT', 'email': 'martin.wabitsch@uniklinik-ulm.de', 'phone': '0049 731 500', 'phoneExt': '57401'}], 'overallOfficials': [{'name': 'Martin Wabitsch, Prof. Dr.', 'role': 'STUDY_CHAIR', 'affiliation': 'University of Ulm'}, {'name': 'David Araujo-Vilar, Prof. Dr.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Santiago de Compostela University'}, {'name': 'Julia von Schnurbein, Dr.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'University of Ulm'}, {'name': 'Gabriele Nagel, Prof.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'University of Ulm'}, {'name': 'Camille Vatier, Dr.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Pierre et Marie Curie School of Medicine (Paris)'}, {'name': 'Marie-Christine Vantyghem, Prof.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Lille University'}, {'name': 'Giovanni Ceccarini, Dr.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Endocrine Unit, University Hospital of Pisa'}, {'name': 'David Savage, Prof.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'University of Cambridge Metabolic Research Laboratories'}]}, 'ipdSharingStatementModule': {'url': 'https://www.eclip-web.org/information/registry/', 'timeFrame': 'As soon as data is entered into the registry, request for data analysis can be handed in.', 'ipdSharing': 'YES', 'description': 'Researches participating in the ECLip registry and third parties independently can request to perform research with the data.', 'accessCriteria': 'Researchers participating in the ECLip registry and independent third parties can request to perform research with the data. For this a formal request for data analysis (data evaluation form; available from the Registry Board) has to be handed to the leader of the Registry Board who will pass it to all board members. These will form a proposal for the Registry members.'}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'University of Ulm', 'class': 'OTHER'}, 'collaborators': [{'name': 'Sorbonne University', 'class': 'OTHER'}, {'name': 'University Hospital, Lille', 'class': 'OTHER'}, {'name': 'University of Cambridge', 'class': 'OTHER'}, {'name': 'Endocrinology Research Centre, Moscow', 'class': 'OTHER_GOV'}, {'name': 'University of Leipzig', 'class': 'OTHER'}, {'name': 'University of Amsterdam', 'class': 'OTHER'}, {'name': 'Dokuz Eylul University', 'class': 'OTHER'}, {'name': 'IRCCS Azienda Ospedaliero-Universitaria di Bologna', 'class': 'OTHER'}, {'name': 'University of Rome Tor Vergata', 'class': 'OTHER'}, {'name': 'University of Pisa', 'class': 'OTHER'}, {'name': 'University of Santiago de Compostela', 'class': 'OTHER'}, {'name': 'Università degli Studi del Piemonte Orientale Amedeo Avogadro', 'class': 'OTHER'}, {'name': 'University Hospital Muenster', 'class': 'OTHER'}, {'name': 'Szeged University', 'class': 'OTHER'}, {'name': 'Centro Hospitalar do Porto', 'class': 'OTHER'}, {'name': 'University Medical Centre Ljubljana', 'class': 'OTHER'}, {'name': 'Medical University of Vienna', 'class': 'OTHER'}, {'name': 'National and Kapodistrian University of Athens', 'class': 'OTHER'}, {'name': 'Stoffwechselzentrum St. Gallen', 'class': 'UNKNOWN'}, {'name': 'National Taiwan University Hospital', 'class': 'OTHER'}, {'name': 'Marmara University', 'class': 'OTHER'}, {'name': 'University of Palermo', 'class': 'OTHER'}, {'name': 'Attikon Hospital', 'class': 'OTHER'}, {'name': 'Kinderkrankenhaus auf der Bult', 'class': 'OTHER'}, {'name': 'Hopital Universitaire Robert-Debre', 'class': 'OTHER'}, {'name': 'University of Milan', 'class': 'OTHER'}, {'name': 'C.I. Parhon National Institute of Endocrinology', 'class': 'OTHER'}], 'responsibleParty': {'type': 'PRINCIPAL_INVESTIGATOR', 'investigatorTitle': 'Prinicipal Investigator', 'investigatorFullName': 'Julia von Schnurbein', 'investigatorAffiliation': 'University of Ulm'}}}}