Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford

NCT01793168 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 20000

Last updated 2025-05-29

No results posted yet for this study

Summary

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.

Conditions

  • Rare Disorders
  • Undiagnosed Disorders
  • Disorders of Unknown Prevalence
  • Cornelia De Lange Syndrome
  • Prenatal Benign Hypophosphatasia
  • Perinatal Lethal Hypophosphatasia
  • Odontohypophosphatasia
  • Adult Hypophosphatasia
  • Childhood-onset Hypophosphatasia
  • Infantile Hypophosphatasia
  • Hypophosphatasia
  • Kabuki Syndrome
  • Bohring-Opitz Syndrome
  • Narcolepsy Without Cataplexy
  • Narcolepsy-cataplexy
  • Hypersomnolence Disorder
  • Idiopathic Hypersomnia Without Long Sleep Time
  • Idiopathic Hypersomnia With Long Sleep Time
  • Idiopathic Hypersomnia
  • Kleine-Levin Syndrome
  • Kawasaki Disease
  • Leiomyosarcoma
  • Leiomyosarcoma of the Corpus Uteri
  • Leiomyosarcoma of the Cervix Uteri
  • Leiomyosarcoma of Small Intestine
  • Acquired Myasthenia Gravis
  • Addison Disease
  • Hyperacusis (Hyperacousis)
  • Juvenile Myasthenia Gravis
  • Transient Neonatal Myasthenia Gravis
  • Williams Syndrome
  • Lyme Disease
  • Myasthenia Gravis
  • Marinesco Sjogren Syndrome(Marinesco-Sjogren Syndrome)
  • Isolated Klippel-Feil Syndrome
  • Frasier Syndrome
  • Denys-Drash Syndrome
  • Beckwith-Wiedemann Syndrome
  • Emanuel Syndrome
  • Isolated Aniridia
  • Axenfeld-Rieger Syndrome
  • Aniridia-intellectual Disability Syndrome
  • Aniridia - Renal Agenesis - Psychomotor Retardation
  • Aniridia - Ptosis - Intellectual Disability - Familial Obesity
  • Aniridia - Cerebellar Ataxia - Intellectual Disability
  • Aniridia - Absent Patella
  • Aniridia
  • Peters Anomaly - Cataract
  • Peters Anomaly
  • Potocki-Shaffer Syndrome
  • Silver-Russell Syndrome Due to Maternal Uniparental Disomy of Chromosome 11
  • Silver-Russell Syndrome Due to Imprinting Defect of 11p15
  • Silver-Russell Syndrome Due to 11p15 Microduplication
  • Syndromic Aniridia
  • WAGR Syndrome
  • Wolf-Hirschhorn Syndrome
  • 4p16.3 Microduplication Syndrome
  • 4p Deletion Syndrome, Non-Wolf-Hirschhorn Syndrome
  • Autosomal Recessive Stickler Syndrome
  • Stickler Syndrome Type 2
  • Stickler Syndrome Type 1
  • Stickler Syndrome
  • Mucolipidosis Type 4
  • X-linked Spinocerebellar Ataxia Type 4
  • X-linked Spinocerebellar Ataxia Type 3
  • X-linked Intellectual Disability - Ataxia - Apraxia
  • X-linked Progressive Cerebellar Ataxia
  • X-linked Non Progressive Cerebellar Ataxia
  • X-linked Cerebellar Ataxia
  • Vitamin B12 Deficiency Ataxia
  • Toxic Exposure Ataxia
  • Unclassified Autosomal Dominant Spinocerebellar Ataxia
  • Thyroid Antibody Ataxia
  • Sporadic Adult-onset Ataxia of Unknown Etiology
  • Spinocerebellar Ataxia With Oculomotor Anomaly
  • Spinocerebellar Ataxia With Epilepsy
  • Spinocerebellar Ataxia With Axonal Neuropathy Type 2
  • Spinocerebellar Ataxia Type 8
  • Spinocerebellar Ataxia Type 7
  • Spinocerebellar Ataxia Type 6
  • Spinocerebellar Ataxia Type 5
  • Spinocerebellar Ataxia Type 4
  • Spinocerebellar Ataxia Type 37
  • Spinocerebellar Ataxia Type 36
  • Spinocerebellar Ataxia Type 35
  • Spinocerebellar Ataxia Type 34
  • Spinocerebellar Ataxia Type 32
  • Spinocerebellar Ataxia Type 31
  • Spinocerebellar Ataxia Type 30
  • Spinocerebellar Ataxia Type 3
  • Spinocerebellar Ataxia Type 29
  • Spinocerebellar Ataxia Type 28
  • Spinocerebellar Ataxia Type 27
  • Spinocerebellar Ataxia Type 26
  • Spinocerebellar Ataxia Type 25
  • Spinocerebellar Ataxia Type 23
  • Spinocerebellar Ataxia Type 22
  • Spinocerebellar Ataxia Type 21
  • Spinocerebellar Ataxia Type 20
  • Spinocerebellar Ataxia Type 2
  • Spinocerebellar Ataxia Type 19/22
  • Spinocerebellar Ataxia Type 18
  • Spinocerebellar Ataxia Type 17
  • Spinocerebellar Ataxia Type 16
  • Spinocerebellar Ataxia Type 15/16
  • Spinocerebellar Ataxia Type 14
  • Spinocerebellar Ataxia Type 13
  • Spinocerebellar Ataxia Type 12
  • Spinocerebellar Ataxia Type 11
  • Spinocerebellar Ataxia Type 10
  • Spinocerebellar Ataxia Type 1 With Axonal Neuropathy
  • Spinocerebellar Ataxia Type 1
  • Spinocerebellar Ataxia - Unknown
  • Spinocerebellar Ataxia - Dysmorphism
  • Non Progressive Epilepsy and/or Ataxia With Myoclonus as a Major Feature
  • Spasticity-ataxia-gait Anomalies Syndrome
  • Spastic Ataxia With Congenital Miosis
  • Spastic Ataxia - Corneal Dystrophy
  • Spastic Ataxia
  • Rare Hereditary Ataxia
  • Rare Ataxia
  • Recessive Mitochondrial Ataxia Syndrome
  • Progressive Epilepsy and/or Ataxia With Myoclonus as a Major Feature
  • Posterior Column Ataxia - Retinitis Pigmentosa
  • Post-Stroke Ataxia
  • Post-Head Injury Ataxia
  • Post Vaccination Ataxia
  • Polyneuropathy - Hearing Loss - Ataxia - Retinitis Pigmentosa - Cataract
  • Muscular Atrophy - Ataxia - Retinitis Pigmentosa - Diabetes Mellitus
  • Non-hereditary Degenerative Ataxia
  • Paroxysmal Dystonic Choreathetosis With Episodic Ataxia and Spasticity
  • Olivopontocerebellar Atrophy - Deafness
  • NARP Syndrome
  • Myoclonus - Cerebellar Ataxia - Deafness
  • Multiple System Atrophy, Parkinsonian Type
  • Multiple System Atrophy, Cerebellar Type
  • Multiple System Atrophy
  • Maternally-inherited Leigh Syndrome
  • Machado-Joseph Disease Type 3
  • Machado-Joseph Disease Type 2
  • Machado-Joseph Disease Type 1
  • Leigh Syndrome
  • Late-onset Ataxia With Dementia
  • Infection or Post Infection Ataxia
  • GAD Ataxia
  • Hereditary Episodic Ataxia
  • Gliadin/Gluten Ataxia
  • Friedreich Ataxia
  • Fragile X-associated Tremor/Ataxia Syndrome
  • Familial Paroxysmal Ataxia
  • Exposure to Medications Ataxia
  • Episodic Ataxia With Slurred Speech
  • Episodic Ataxia Unknown Type
  • Episodic Ataxia Type 7
  • Episodic Ataxia Type 6
  • Episodic Ataxia Type 5
  • Episodic Ataxia Type 4
  • Episodic Ataxia Type 3
  • Episodic Ataxia Type 1
  • Epilepsy and/or Ataxia With Myoclonus as Major Feature
  • Early-onset Spastic Ataxia-neuropathy Syndrome
  • Early-onset Progressive Neurodegeneration - Blindness - Ataxia - Spasticity
  • Early-onset Cerebellar Ataxia With Retained Tendon Reflexes
  • Early-onset Ataxia With Dementia
  • Childhood-onset Autosomal Recessive Slowly Progressive Spinocerebellar Ataxia
  • Dilated Cardiomyopathy With Ataxia
  • Cataract - Ataxia - Deafness
  • Cerebellar Ataxia, Cayman Type
  • Cerebellar Ataxia With Peripheral Neuropathy
  • Cerebellar Ataxia - Hypogonadism
  • Cerebellar Ataxia - Ectodermal Dysplasia
  • Cerebellar Ataxia - Areflexia - Pes Cavus - Optic Atrophy - Sensorineural Hearing Loss
  • Brain Tumor Ataxia
  • Brachydactyly - Nystagmus - Cerebellar Ataxia
  • Benign Paroxysmal Tonic Upgaze of Childhood With Ataxia
  • Autosomal Recessive Syndromic Cerebellar Ataxia
  • Autosomal Recessive Spastic Ataxia With Leukoencephalopathy
  • Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay
  • Autosomal Recessive Spastic Ataxia - Optic Atrophy - Dysarthria
  • Autosomal Recessive Spastic Ataxia
  • Autosomal Recessive Metabolic Cerebellar Ataxia
  • Autosomal Dominant Spinocerebellar Ataxia Due to Repeat Expansions That do Not Encode Polyglutamine
  • Autosomal Recessive Ataxia, Beauce Type
  • Autosomal Recessive Ataxia Due to Ubiquinone Deficiency
  • Autosomal Recessive Ataxia Due to PEX10 Deficiency
  • Autosomal Recessive Degenerative and Progressive Cerebellar Ataxia
  • Autosomal Recessive Congenital Cerebellar Ataxia Due to MGLUR1 Deficiency
  • Autosomal Recessive Congenital Cerebellar Ataxia Due to GRID2 Deficiency
  • Autosomal Recessive Congenital Cerebellar Ataxia
  • Autosomal Recessive Cerebellar Ataxia-pyramidal Signs-nystagmus-oculomotor Apraxia Syndrome
  • Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to WWOX Deficiency
  • Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to TUD Deficiency
  • Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to KIAA0226 Deficiency
  • Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome
  • Autosomal Recessive Cerebellar Ataxia With Late-onset Spasticity
  • Autosomal Recessive Cerebellar Ataxia Due to STUB1 Deficiency
  • Autosomal Recessive Cerebellar Ataxia Due to a DNA Repair Defect
  • Autosomal Recessive Cerebellar Ataxia - Saccadic Intrusion
  • Autosomal Recessive Cerebellar Ataxia - Psychomotor Retardation
  • Autosomal Recessive Cerebellar Ataxia - Blindness - Deafness
  • Autosomal Recessive Cerebellar Ataxia
  • Autosomal Dominant Spinocerebellar Ataxia Due to a Polyglutamine Anomaly
  • Autosomal Dominant Spinocerebellar Ataxia Due to a Point Mutation
  • Autosomal Dominant Spinocerebellar Ataxia Due to a Channelopathy
  • Autosomal Dominant Spastic Ataxia Type 1
  • Autosomal Dominant Spastic Ataxia
  • Autosomal Dominant Optic Atrophy
  • Ataxia-telangiectasia Variant
  • Ataxia-telangiectasia
  • Autosomal Dominant Cerebellar Ataxia, Deafness and Narcolepsy
  • Autosomal Dominant Cerebellar Ataxia Type 4
  • Autosomal Dominant Cerebellar Ataxia Type 3
  • Autosomal Dominant Cerebellar Ataxia Type 2
  • Autosomal Dominant Cerebellar Ataxia Type 1
  • Autosomal Dominant Cerebellar Ataxia
  • Ataxia-telangiectasia-like Disorder
  • Ataxia With Vitamin E Deficiency
  • Ataxia With Dementia
  • Ataxia - Oculomotor Apraxia Type 1
  • Ataxia - Other
  • Ataxia - Genetic Diagnosis - Unknown
  • Acquired Ataxia
  • Adult-onset Autosomal Recessive Cerebellar Ataxia
  • Alcohol Related Ataxia
  • Multiple Endocrine Neoplasia
  • Multiple Endocrine Neoplasia Type II
  • Multiple Endocrine Neoplasia Type 1
  • Multiple Endocrine Neoplasia Type 2
  • Multiple Endocrine Neoplasia, Type IV
  • Multiple Endocrine Neoplasia, Type 3
  • Multiple Endocrine Neoplasia (MEN) Syndrome
  • Multiple Endocrine Neoplasia Type 2B
  • Multiple Endocrine Neoplasia Type 2A
  • Atypical Hemolytic Uremic Syndrome
  • Atypical HUS
  • Wiedemann-Steiner Syndrome
  • Breast Implant-Associated Anaplastic Large Cell Lymphoma
  • Autoimmune/Inflammatory Syndrome Induced by Adjuvants (ASIA)
  • Hemophagocytic Lymphohistiocytosis
  • Behcet's Disease
  • Alagille Syndrome
  • Inclusion Body Myopathy With Early-onset Paget Disease and Frontotemporal Dementia (IBMPFD)
  • Lowe Syndrome
  • Pitt Hopkins Syndrome
  • 1p36 Deletion Syndrome
  • Jansen Type Metaphyseal Chondrodysplasia
  • Cockayne Syndrome
  • Chronic Recurrent Multifocal Osteomyelitis
  • CRMO
  • Malan Syndrome
  • Hereditary Sensory and Autonomic Neuropathy Type Ie
  • VCP Disease
  • Hypnic Jerking
  • Sleep Myoclonus
  • Mollaret Meningitis
  • Recurrent Viral Meningitis
  • CRB1
  • Leber Congenital Amaurosis
  • Retinitis Pigmentosa
  • Rare Retinal Disorder
  • KCNMA1-Channelopathy
  • Primary Biliary Cirrhosis
  • ZMYND11
  • Transient Global Amnesia
  • Glycogen Storage Disease
  • Alstrom Syndrome
  • White Sutton Syndrome
  • DNM1
  • EIEE31
  • Myhre Syndrome
  • Recurrent Respiratory Papillomatosis
  • Laryngeal Papillomatosis
  • Tracheal Papillomatosis
  • Refsum Disease
  • Nicolaides Baraitser Syndrome
  • Leukodystrophy
  • Tango2
  • Cauda Equina Syndrome
  • Rare Gastrointestinal Disorders
  • Achalasia-Addisonian Syndrome
  • Achalasia Cardia
  • Achalasia Icrocephaly Syndrome
  • Anal Fistula
  • Congenital Sucrase-Isomaltase Deficiency
  • Eosinophilic Gastroenteritis
  • Idiopathic Gastroparesis
  • Hirschsprung Disease
  • Rare Inflammatory Bowel Disease
  • Intestinal Pseudo-Obstruction
  • Scleroderma
  • Short Bowel Syndrome
  • Sacral Agenesis
  • Sacral Agenesis Syndrome
  • Caudal Regression
  • Scheuermann Disease
  • SMC1A Truncated Mutations (Causing Loss of Gene Function)
  • Cystinosis
  • Juvenile Nephropathic Cystinosis
  • Nephropathic Cystinosis
  • Kennedy Disease
  • Spinal Bulbar Muscular Atrophy
  • Warburg Micro Syndrome
  • Mucolipidoses
  • Mitochondrial Diseases
  • Mitochondrial Aminoacyl-tRNA Synthetases
  • Mt-aaRS Disorders
  • Hypertrophic Olivary Degeneration
  • Non-Ketotic Hyperglycinemia
  • Fish Odor Syndrome
  • Halitosis
  • Isolated Congenital Asplenia
  • Lambert Eaton (LEMS)
  • Biliary Atresia
  • STAG1 Gene Mutation
  • Coffin Lowry Syndrome
  • Borjeson-Forssman-Lehman Syndrome
  • Blau Syndrome
  • Arginase 1 Deficiency
  • HSPB8 Myopathy
  • Beta-Mannosidosis
  • TBX4 Syndrome
  • DHDDS Gene Mutations
  • MAND-MBD5-Associated Neurodevelopmental Disorder
  • Constitutional Mismatch Repair Deficiency (CMMRD)
  • SPATA5 Disorder
  • SPATA5L1 Related Disorder
  • Acrodysostosis
  • Multi-systematic Smooth Muscle Dysfunction Syndrome
  • CRELD1 (Cysteine Rich With EGF Like Domains 1)
  • GNB1 Syndrome
  • Pyruvate Dehydrogenase Complex Deficiency Disease
  • Beta Mannosidosis
  • Kbg Syndrome
  • Labrune Syndrome
  • Metachromatic Leukodystrophy (MLD)
  • Moyamoya Disease
  • OPHN1 Syndrome
  • Oculopharyngeal Muscular Dystrophy (OPMD)
  • TUBB3 Mutation
  • WOREE (WWOX-related Epileptic Encephalopathy
  • SCAR12
  • Skraban-Deardorff Syndrome
  • Hereditary Myopathy With Early Respiratory Failure

Sponsors & Collaborators

  • National Ataxia Foundation

    collaborator OTHER
  • International WAGR Syndrome Association

    collaborator UNKNOWN
  • 4p- Support Group

    collaborator OTHER
  • ML4 Foundation

    collaborator UNKNOWN
  • Cornelia de Lange Syndrome Foundation

    collaborator UNKNOWN
  • Stickler Involved People

    collaborator UNKNOWN
  • Kawasaki Disease Foundation

    collaborator UNKNOWN
  • Klippel-Feil Syndrome Alliance

    collaborator UNKNOWN
  • Klippel-Feil Syndrome Freedom

    collaborator UNKNOWN
  • Hyperacusis Research Limited

    collaborator UNKNOWN
  • Hypersomnia Foundation

    collaborator UNKNOWN
  • Kabuki Syndrome Network

    collaborator OTHER
  • Kleine-Levin Syndrome Foundation

    collaborator UNKNOWN
  • Leiomyosarcoma Direct Research Foundation

    collaborator UNKNOWN
  • Marinesco-Sjogren Syndrome Support Group - NORD

    collaborator OTHER
  • Mucolipidosis Type IV (ML4) Foundation

    collaborator UNKNOWN
  • People with Narcolepsy 4 People with Narcolepsy (PWN4PWN)

    collaborator UNKNOWN
  • Soft Bones Incorporated

    collaborator UNKNOWN
  • American Multiple Endocrine Neoplasia Support

    collaborator UNKNOWN
  • Atypical Hemolytic Uremic Syndrome Foundation

    collaborator UNKNOWN
  • All Things Kabuki

    collaborator UNKNOWN
  • Wiedemann-Steiner Syndrome Foundation

    collaborator UNKNOWN
  • Breast Implant Victim Advocates

    collaborator UNKNOWN
  • PROS Foundation

    collaborator UNKNOWN
  • American Behcet's Disease Association

    collaborator UNKNOWN
  • Alstrom United Kingdom

    collaborator UNKNOWN
  • Athymia

    collaborator UNKNOWN
  • Curing Retinal Blindness Foundation

    collaborator UNKNOWN
  • HSAN1E Society

    collaborator UNKNOWN
  • 1p36 Deletion Support and Awareness

    collaborator UNKNOWN
  • The Alagille Syndrome Alliance

    collaborator UNKNOWN
  • Autoinflammatory Alliance

    collaborator UNKNOWN
  • Beyond Batten Disease Foundation

    collaborator OTHER
  • Bohring-Opitz Syndrome Foundation, INC

    collaborator UNKNOWN
  • Cockayne Syndrome Network (Share and Care)

    collaborator UNKNOWN
  • CRMO Foundation

    collaborator UNKNOWN
  • Cure VCP Disease,INC

    collaborator UNKNOWN
  • FOD Support

    collaborator UNKNOWN
  • Cystinosis Research Foundation

    collaborator OTHER
  • Global DARE Foundation

    collaborator UNKNOWN
  • Hypnic Jerk-Sleep Myoclonus Support Group

    collaborator UNKNOWN
  • Jansen's Foundation

    collaborator UNKNOWN
  • KCNMA1 Channelopathy International Advocacy Foundation

    collaborator UNKNOWN
  • Kawasaki Disease Foundation Australia

    collaborator UNKNOWN
  • Life with LEMS Foundation

    collaborator UNKNOWN
  • Lowe Syndrome Association

    collaborator UNKNOWN
  • The Malan Syndrome Foundation

    collaborator UNKNOWN
  • Maple Syrup Urine Disease Family Support Group

    collaborator UNKNOWN
  • International Association for Muscle Glycogen Storage Disease (IamGSD)

    collaborator UNKNOWN
  • Myhre Syndrome Foundation

    collaborator UNKNOWN
  • DNM1 Families

    collaborator UNKNOWN
  • Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation

    collaborator UNKNOWN
  • The PBCers Organization

    collaborator OTHER
  • Pitt Hopkins Research Foundation

    collaborator OTHER
  • Recurrent Meningitis Association

    collaborator UNKNOWN
  • Recurrent Respiratory Papillomatosis Foundation

    collaborator UNKNOWN
  • Remember the Girls

    collaborator UNKNOWN
  • Smith-Kingsmore Syndrome Foundation

    collaborator UNKNOWN
  • SPG Research Foundation

    collaborator UNKNOWN
  • Team Telomere

    collaborator UNKNOWN
  • Transient Global Amnesia Project

    collaborator UNKNOWN
  • The Charlotte & Gwenyth Gray Foundation

    collaborator UNKNOWN
  • The Cute Syndrome Foundation

    collaborator UNKNOWN
  • The Maddi Foundation

    collaborator UNKNOWN
  • White Sutton Syndrome Foundation

    collaborator UNKNOWN
  • Zmynd11 Gene Disorder

    collaborator UNKNOWN
  • Cauda Equina Foundation, Inc

    collaborator UNKNOWN
  • Tango2 Research Foundation

    collaborator UNKNOWN
  • Noah's Hope - Hope4Bridget Foundation

    collaborator UNKNOWN
  • Project Sebastian

    collaborator UNKNOWN
  • SMC1A Epilepsy Foundation

    collaborator UNKNOWN
  • International Foundation for Gastrointestinal Disorders

    collaborator UNKNOWN
  • Endosalpingiosis Foundation, Inc

    collaborator UNKNOWN
  • International Sacral Agenesis/Caudal Regression Association (ISACRA)

    collaborator UNKNOWN
  • Scheuermann's Disease Fund

    collaborator UNKNOWN
  • Batten Disease Support and Research Association

    collaborator UNKNOWN
  • Kennedy's Disease Association

    collaborator UNKNOWN
  • Cure Mito Foundation

    collaborator UNKNOWN
  • Warburg Micro Research Foundation

    collaborator UNKNOWN
  • Cure Mucolipidosis

    collaborator UNKNOWN
  • Riaan Research Initiative

    collaborator UNKNOWN
  • CureARS A NJ Nonprofit Corporation

    collaborator UNKNOWN
  • CACNA1H Alliance

    collaborator UNKNOWN
  • IMBS Alliance

    collaborator UNKNOWN
  • SHINE-Syndrome Foundaion

    collaborator UNKNOWN
  • Non- Ketotic Hyperglycinemia (NKH) Crusaders

    collaborator UNKNOWN
  • Hypertrophic Olivary Degeneration Association (HODA)

    collaborator UNKNOWN
  • National Organization for Disorders of the Corpus Callosum (NODCC)

    collaborator UNKNOWN
  • Team4Travis

    collaborator UNKNOWN
  • Taylor's Tale Foundation

    collaborator UNKNOWN
  • Lambert Eaton (LEMS) Family Association

    collaborator UNKNOWN
  • BARE Inc

    collaborator UNKNOWN
  • STAG1 Gene Foundation

    collaborator UNKNOWN
  • Coffin Lowry Syndrome Foundation

    collaborator UNKNOWN
  • BLFS Incorporate

    collaborator UNKNOWN
  • Aniridia North America

    collaborator UNKNOWN
  • Cure Blau Syndrome Foundation

    collaborator UNKNOWN
  • ARG1D Foundation

    collaborator UNKNOWN
  • CURE HSPB8 Myopathy

    collaborator UNKNOWN
  • International Society of Mannosidosis and Related Disorders

    collaborator UNKNOWN
  • TBX4Life

    collaborator UNKNOWN
  • Cure DHDDS

    collaborator UNKNOWN
  • MANDKind Foundation

    collaborator UNKNOWN
  • Krishnan Family Foundation

    collaborator UNKNOWN
  • SPATA Foundation

    collaborator UNKNOWN
  • Acrodysostosis Support and Research

    collaborator UNKNOWN
  • ACTA2 Alliance

    collaborator UNKNOWN
  • ANA-Aniridia North America

    collaborator UNKNOWN
  • CRELD1 Warriors

    collaborator UNKNOWN
  • GNB1 Advocacy Group

    collaborator UNKNOWN
  • Hope for PDCD Foundation

    collaborator UNKNOWN
  • ISMRD - Beta Mannosidosis

    collaborator UNKNOWN
  • KBG Syndrome Association

    collaborator UNKNOWN
  • The LCC Foundation

    collaborator UNKNOWN
  • MLD Foundation

    collaborator UNKNOWN
  • MSA United Research Consortium

    collaborator UNKNOWN
  • Moyamoya Foundation

    collaborator UNKNOWN
  • OPMD Association

    collaborator UNKNOWN
  • SKDEAS Foundation

    collaborator UNKNOWN
  • The Foundation for Casey's Cure

    collaborator UNKNOWN
  • TUBB3 Foundation

    collaborator UNKNOWN
  • WWOX Foundation

    collaborator UNKNOWN
  • Sanford Health

    lead OTHER

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2010-07-31
Primary Completion
2100-12-31
Completion
2100-12-31

Countries

  • United States
  • Australia

Study Locations

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Entities

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01793168 on ClinicalTrials.gov