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| NCT Number | NCT01793168 |
| Lead Sponsor | Sanford Health
Collaborators: National Ataxia Foundation, International WAGR Syndrome Association, 4p- Support Group, ML4 Foundation, Cornelia de Lange Syndrome Foundation, Stickler Involved People, Kawasaki Disease Foundation, Klippel-Feil Syndrome Alliance, Klippel-Feil Syndrome Freedom, Hyperacusis Research Limited, Hypersomnia Foundation, Kabuki Syndrome Network, Kleine-Levin Syndrome Foundation, Leiomyosarcoma Direct Research Foundation, Marinesco-Sjogren Syndrome Support Group - NORD, Mucolipidosis Type IV (ML4) Foundation, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), Soft Bones Incorporated, American Multiple Endocrine Neoplasia Support, Atypical Hemolytic Uremic Syndrome Foundation, All Things Kabuki, Wiedemann-Steiner Syndrome Foundation, Breast Implant Victim Advocates, PROS Foundation, American Behcet's Disease Association, Alstrom United Kingdom, Athymia, Curing Retinal Blindness Foundation, HSAN1E Society, 1p36 Deletion Support and Awareness, The Alagille Syndrome Alliance, Autoinflammatory Alliance, Beyond Batten Disease Foundation, Bohring-Opitz Syndrome Foundation, INC, Cockayne Syndrome Network (Share and Care), CRMO Foundation, Cure VCP Disease,INC, FOD Support, Cystinosis Research Foundation, Global DARE Foundation, Hypnic Jerk-Sleep Myoclonus Support Group, Jansen's Foundation, KCNMA1 Channelopathy International Advocacy Foundation, Kawasaki Disease Foundation Australia, Life with LEMS Foundation, Lowe Syndrome Association, The Malan Syndrome Foundation, Maple Syrup Urine Disease Family Support Group, International Association for Muscle Glycogen Storage Disease (IamGSD), Myhre Syndrome Foundation, DNM1 Families, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, The PBCers Organization, Pitt Hopkins Research Foundation, Recurrent Meningitis Association, Recurrent Respiratory Papillomatosis Foundation, Remember the Girls, Smith-Kingsmore Syndrome Foundation, SPG Research Foundation, Team Telomere, Transient Global Amnesia Project, The Charlotte & Gwenyth Gray Foundation, The Cute Syndrome Foundation, The Maddi Foundation, White Sutton Syndrome Foundation, Zmynd11 Gene Disorder, Cauda Equina Foundation, Inc, Tango2 Research Foundation, Noah's Hope - Hope4Bridget Foundation, Project Sebastian, SMC1A Epilepsy Foundation, International Foundation for Gastrointestinal Disorders, Endosalpingiosis Foundation, Inc, International Sacral Agenesis/Caudal Regression Association (ISACRA), Scheuermann's Disease Fund, Batten Disease Support and Research Association, Kennedy's Disease Association, Cure Mito Foundation, Warburg Micro Research Foundation, Cure Mucolipidosis, Riaan Research Initiative, CureARS A NJ Nonprofit Corporation, CACNA1H Alliance, IMBS Alliance, SHINE-Syndrome Foundaion, Non- Ketotic Hyperglycinemia (NKH) Crusaders, Hypertrophic Olivary Degeneration Association (HODA), National Organization for Disorders of the Corpus Callosum (NODCC), Team4Travis, Taylor's Tale Foundation, Lambert Eaton (LEMS) Family Association, BARE Inc, STAG1 Gene Foundation, Coffin Lowry Syndrome Foundation, BLFS Incorporate, Aniridia North America, Cure Blau Syndrome Foundation, ARG1D Foundation, CURE HSPB8 Myopathy, International Society of Mannosidosis and Related Disorders, TBX4Life, Cure DHDDS, MANDKind Foundation, Krishnan Family Foundation, SPATA Foundation, Acrodysostosis Support and Research, ACTA2 Alliance, ANA-Aniridia North America, CRELD1 Warriors, GNB1 Advocacy Group, Hope for PDCD Foundation, ISMRD - Beta Mannosidosis, KBG Syndrome Association, The LCC Foundation, MLD Foundation, MSA United Research Consortium, Moyamoya Foundation, OPMD Association, SKDEAS Foundation, The Foundation for Casey's Cure, TUBB3 Foundation, WWOX Foundation |
| Conditions (from sponsor) |
Rare Disorders, Undiagnosed Disorders, Disorders of Unknown Prevalence, Cornelia De Lange Syndrome, Prenatal Benign Hypophosphatasia, Perinatal Lethal Hypophosphatasia, Odontohypophosphatasia, Adult Hypophosphatasia +335 more |
| Related terms | 3-Methylglutaconic Aciduria, Type V, Achalasia Addisonianism Alacrimia syndrome, Acrodysostosis, Addison Disease, Alagille Syndrome, Alstrom Syndrome, Amnesia, Transient Global, Aniridia, Aniridia and Absent Patella, Aniridia, Partial, with Unilateral Renal Agenesis and Psychomotor Retardation, Ataxia, Ataxia Neuropathy Spectrum, Ataxia Telangiectasia, Ataxia Telangiectasia Like Disorder, Ataxia with vitamin E deficiency, Ataxia, Spastic, 3, Autosomal Recessive, Ataxia, Spastic, with Congenital Miosis, Ataxia-Telangiectasia Variant, Atypical Hemolytic Uremic Syndrome, Axenfeld-Rieger syndrome, Beckwith-Wiedemann Syndrome, beta-Mannosidosis, Biliary Atresia, Blau syndrome, Bohring syndrome, Brachydactyly-Nystagmus-Cerebellar Ataxia, Bulbo-Spinal Atrophy, X-Linked, CAPOS syndrome, Cataract ataxia deafness, Cauda Equina Syndrome, Cerebellar Ataxia and Hypogonadotropic Hypogonadism, Cerebellar ataxia ectodermal dysplasia, Cerebellar Ataxia, Cayman Type, Chromosome 1p36 Deletion Syndrome, Chronic recurrent multifocal osteomyelitis, Cockayne Syndrome, Coffin-Lowry Syndrome, Cystinosis, Cystinosis, Infantile Nephropathic, Cystinosis, Late-Onset Juvenile or Adolescent Nephropathic Type, De Lange Syndrome, Deafness, Denys-Drash Syndrome, Dimethylglycine Dehydrogenase Deficiency, Disorders of Excessive Somnolence, Early-onset ataxia with oculomotor apraxia and hypoalbuminemia, Emanuel syndrome, Eosinophilic enteropathy, Episodic Ataxia, Type 1, Episodic Ataxia, Type 2, Episodic Ataxia, Type 3, Episodic Ataxia, Type 4, Episodic Ataxia, Type 5, Episodic Ataxia, Type 6, Episodic Ataxia, Type 7, Erythrokeratodermia with ataxia, Esophageal Achalasia, Fragile X Tremor Ataxia Syndrome, Frasier Syndrome, Friedreich Ataxia, Frontotemporal Dementia, Glycogen Storage Disease, Growth Deficiency and Mental Retardation with Facial Dysmorphism, Growth mental deficiency syndrome of Myhre, Halitosis, Harding ataxia, Hereditary Myopathy with Early Respiratory Failure, Hereditary Sensory and Autonomic Neuropathies, Hereditary Sensory and Autonomic Neuropathy Type Ie, Hirschsprung Disease, Hyperacusis, Hyperargininemia, Hyperglycinemia, Nonketotic, Hypophosphatasia, Hypophosphatasia, Adult, Hypophosphatasia, Childhood, Hypophosphatasia, Perinatal Lethal, Idiopathic Hypersomnia, Inclusion Body Myopathy With Early-Onset Paget Disease And Frontotemporal Dementia, Infections, Intestinal Pseudo-Obstruction, Jansen type metaphyseal chondrodysplasia, Kabuki syndrome, KBG syndrome, Kleine-Levin Syndrome, Klippel-Feil Syndrome, Lambert-Eaton Myasthenic Syndrome, Laryngeal papillomatosis, Leber Congenital Amaurosis, Leigh Disease, Leiomyosarcoma, Leukodystrophy, Metachromatic, Leukoencephalopathy Brain Calcifications and Cysts, Liver Cirrhosis, Biliary, Lyme Disease, Lymphohistiocytosis, Hemophagocytic, Machado-Joseph Disease, Maternally Inherited Leigh Syndrome, Meningitis, Viral, Mitochondrial Diseases, Moyamoya Disease, Mucocutaneous Lymph Node Syndrome, Mucolipidoses, Multiple Endocrine Neoplasia, Multiple Endocrine Neoplasia Type 1, Multiple Endocrine Neoplasia Type 2a, Multiple Endocrine Neoplasia Type 2b, Multiple Endocrine Neoplasia, Type IV, Multiple System Atrophy, Muscle Spasticity, Muscular Atrophy, Ataxia, Retinitis Pigmentosa, and Diabetes Mellitus, Muscular Dystrophy, Oculopharyngeal, Myasthenia Gravis, Myasthenia Gravis, Neonatal, Myoclonus, Myoclonus, Cerebellar Ataxia, and Deafness, Narcolepsy, Neglected Diseases, Neuronal Ceroid-Lipofuscinoses, Neuropathy ataxia and retinitis pigmentosa, Nicolaides Baraitser syndrome, Oculocerebrorenal Syndrome, Odontohypophosphatasia, Olivary Degeneration, Olivopontocerebellar Atrophy V, Optic Atrophy, Autosomal Dominant, Paroxysmal Tonic Upgaze, Benign Childhood, With Ataxia, Peters anomaly, Pitt-Hopkins syndrome, Polyneuropathy, Hearing Loss, Ataxia, Retinitis Pigmentosa, And Cataract, Potocki-Shaffer syndrome, Pyruvate Dehydrogenase Complex Deficiency Disease, Rare Diseases, Rectal Fistula, Recurrent respiratory papillomatosis, Refsum Disease, Retinitis Pigmentosa, Sacral Agenesis Syndrome, Sacral defect and anterior sacral meningocele, Scheuermann Disease, Scleroderma, Diffuse, Sensorimotor neuropathy with ataxia, autosomal dominant, Short Bowel Syndrome, Spastic Ataxia, Spastic ataxia Charlevoix-Saguenay type, Spinocerebellar Ataxia 10, Spinocerebellar Ataxia 11, Spinocerebellar Ataxia 12, Spinocerebellar ataxia 13, Spinocerebellar ataxia 14, Spinocerebellar Ataxia 15, Spinocerebellar ataxia 20, Spinocerebellar ataxia 21, Spinocerebellar ataxia 23, Spinocerebellar ataxia 25, Spinocerebellar ataxia 26, Spinocerebellar ataxia 27, Spinocerebellar ataxia 28, Spinocerebellar ataxia 30, Spinocerebellar Ataxia 31, Spinocerebellar ataxia 8, Spinocerebellar Ataxia with Epilepsy, Spinocerebellar ataxia, autosomal recessive 1, Spinocerebellar ataxia, autosomal recessive 10, Spinocerebellar Ataxia, Autosomal Recessive 7, Spinocerebellar Ataxia, Autosomal Recessive 8, Spinocerebellar ataxia, X-linked, 3, Spinocerebellar ataxia, X-linked, 4, Spinocerebellar Ataxias, Spinocerebellar Degenerations, Stickler syndrome, type 1, Stickler syndrome, type 2, Sucrase-isomaltase deficiency, congenital, Syndrome, Trimethylaminuria, Turcot syndrome, WAGR Syndrome, Warburg Sjo Fledelius syndrome, Williams Syndrome, Wolf-Hirschhorn Syndrome |
| Enrollment | 20,000 participants |
| Start Date | |
| Primary Completion | (estimated) |
| Study Completion | (estimated) |
| Updated on ClinicalTrials.gov |