Records containing: Rare Diseases
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CLINICAL_TRIALS study record update · 2022-09-01Colombia National Porphyria Registry
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CLINICAL_TRIALS study record update · 2022-07-11A Structured Survey Among Fabry Patients With a Focus on Adherence to Therapy, Quality of Life and Pain Control
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CLINICAL_TRIALS study record update · 2022-07-07Prospective Monocentric Cohort Study to Evaluate Predictors for Heart Failure and Sudden Cardiac Death in Patients With Fabry Disease
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CLINICAL_TRIALS study record update · 2022-05-23Diagnostic Research in Patients With Rare Diseases - Solving the Unsolved Rare Diseases
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CLINICAL_TRIALS study record update · 2022-04-26Étude Pilote du Séquençage Rapide du génome Humain Des Patients sévèrement Malades Dans Les Soins Intensifs en pédiatrie
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CLINICAL_TRIALS study record update · 2021-12-09Psychosocial Situation of Children With Rare (Congenital) Pediatric Surgical Diseases and Their Families
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CLINICAL_TRIALS study record update · 2021-09-29European Registry on Rare Neurological Diseases
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CLINICAL_TRIALS study record update · 2021-09-02COVID-19 and Rare Skin Diseases. European Observational Study (Data Research) During an Epidemic
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CLINICAL_TRIALS study record update · 2021-08-30Identification of Factors Associated With the Occurrence of Severe Forms of COVID-19 Infection in Patients With Inflammatory Rheumatism or Autoimmune Diseases
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CLINICAL_TRIALS study record update · 2021-02-24Kidney Information Network for Disease Research and Education (KINDRED)
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CLINICAL_TRIALS study record update · 2021-01-08COVID Vaccination in Rare and Complex Connective Tissue Diseases: ERN ReCONNET Multicentre Prospective Cohort Study
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CLINICAL_TRIALS study record update · 2020-11-18NICUSeq: A Prospective Trial to Evaluate the Clinical Utility of Human Whole Genome Sequencing (WGS) Compared to Standard of Care in Acute Care Neonates and Infants
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CLINICAL_TRIALS study record update · 2020-06-0512-months of Treatment With Burosumab in Children and Adolescents With X-linked Hypophosphatemia: a Prospective Longitudinal Cohort Study
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CLINICAL_TRIALS study record update · 2019-11-05Functional Genomics of Rare Genetic Diseases: Realization of Innovative Tools With High Diagnostic Power
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CLINICAL_TRIALS study record update · 2019-04-01Your Voice; Impact of DMD. A Qualitative Assessment of the Impact of DMD on the Lives of Families
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CLINICAL_TRIALS study record update · 2018-02-08Clinical Collaborative Research of Whole Genome Sequencing in the Detection of Rare Undiagnosed Genetic Diseases in Children in China
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CLINICAL_TRIALS study record update · 2017-10-26Finding Genes for Rare Diseases