Skip to main content
OpenTrials
Recruiting

NCT Number: NCT01793168

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

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.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Rare Disorders 1p36 Deletion Syndrome 3-Methylglutaconic Aciduria, Type V 4p Deletion Syndrome, Non-Wolf-Hirschhorn Syndrome 4p16.3 Microduplication Syndrome Abnormalities, Multiple Achalasia Addisonianism Alacrimia syndrome Achalasia Cardia Achalasia Icrocephaly Syndrome Achalasia-Addisonian Syndrome Acquired Ataxia Acquired Myasthenia Gravis Acrodysostosis Addison Disease Adrenal Gland Diseases Adrenal Insufficiency Adult Hypophosphatasia Adult-onset Autosomal Recessive Cerebellar Ataxia Alagille Syndrome Alcohol Related Ataxia Alstrom Syndrome Amino Acid Metabolism, Inborn Errors Amino Acid Transport Disorders, Inborn Amnesia Amnesia, Transient Global Anal Fistula Anemia Anemia, Hemolytic Aniridia Aniridia - Absent Patella Aniridia - Cerebellar Ataxia - Intellectual Disability Aniridia - Ptosis - Intellectual Disability - Familial Obesity Aniridia - Renal Agenesis - Psychomotor Retardation Aniridia and Absent Patella Aniridia, Partial, with Unilateral Renal Agenesis and Psychomotor Retardation Aniridia-intellectual Disability Syndrome Aortic Stenosis, Supravalvular Aortic Valve Disease Aortic Valve Stenosis Arginase 1 Deficiency Arterial Occlusive Diseases Ataxia Ataxia - Genetic Diagnosis - Unknown Ataxia - Oculomotor Apraxia Type 1 Ataxia - Other Ataxia Neuropathy Spectrum Ataxia Telangiectasia Ataxia Telangiectasia Like Disorder Ataxia With Dementia Ataxia With Vitamin E Deficiency Ataxia, Spastic, 3, Autosomal Recessive Ataxia, Spastic, with Congenital Miosis Ataxia-Telangiectasia Ataxia-Telangiectasia Variant Ataxia-telangiectasia-like Disorder Atypical HUS Atypical Hemolytic Uremic Syndrome Autoimmune Diseases Autoimmune Diseases of the Nervous System Autoimmune/Inflammatory Syndrome Induced by Adjuvants (ASIA) Autonomic Nervous System Diseases Autosomal Dominant Cerebellar Ataxia Autosomal Dominant Cerebellar Ataxia Type 1 Autosomal Dominant Cerebellar Ataxia Type 2 Autosomal Dominant Cerebellar Ataxia Type 3 Autosomal Dominant Cerebellar Ataxia Type 4 Autosomal Dominant Cerebellar Ataxia, Deafness and Narcolepsy Autosomal Dominant Optic Atrophy Autosomal Dominant Spastic Ataxia Autosomal Dominant Spastic Ataxia Type 1 Autosomal Dominant Spinocerebellar Ataxia Due to Repeat Expansions That do Not Encode Polyglutamine Autosomal Dominant Spinocerebellar Ataxia Due to a Channelopathy Autosomal Dominant Spinocerebellar Ataxia Due to a Point Mutation Autosomal Dominant Spinocerebellar Ataxia Due to a Polyglutamine Anomaly Autosomal Recessive Ataxia Due to PEX10 Deficiency Autosomal Recessive Ataxia Due to Ubiquinone Deficiency Autosomal Recessive Ataxia, Beauce Type Autosomal Recessive Cerebellar Ataxia Autosomal Recessive Cerebellar Ataxia - Blindness - Deafness Autosomal Recessive Cerebellar Ataxia - Psychomotor Retardation Autosomal Recessive Cerebellar Ataxia - Saccadic Intrusion Autosomal Recessive Cerebellar Ataxia Due to STUB1 Deficiency Autosomal Recessive Cerebellar Ataxia Due to a DNA Repair Defect Autosomal Recessive Cerebellar Ataxia With Late-onset Spasticity Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to KIAA0226 Deficiency Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to TUD Deficiency Autosomal Recessive Cerebellar Ataxia-epilepsy-intellectual Disability Syndrome Due to WWOX Deficiency Autosomal Recessive Cerebellar Ataxia-pyramidal Signs-nystagmus-oculomotor Apraxia Syndrome Autosomal Recessive Congenital Cerebellar Ataxia Autosomal Recessive Congenital Cerebellar Ataxia Due to GRID2 Deficiency Autosomal Recessive Congenital Cerebellar Ataxia Due to MGLUR1 Deficiency Autosomal Recessive Degenerative and Progressive Cerebellar Ataxia Autosomal Recessive Metabolic Cerebellar Ataxia Autosomal Recessive Spastic Ataxia Autosomal Recessive Spastic Ataxia - Optic Atrophy - Dysarthria Autosomal Recessive Spastic Ataxia With Leukoencephalopathy Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay Autosomal Recessive Stickler Syndrome Autosomal Recessive Syndromic Cerebellar Ataxia Axenfeld-Rieger Syndrome Bacterial Infections Bacterial Infections and Mycoses Basal Ganglia Diseases Beckwith-Wiedemann Syndrome Behcet's Disease Benign Paroxysmal Tonic Upgaze of Childhood With Ataxia Beta Mannosidosis Beta-Mannosidosis Bile Duct Diseases Biliary Atresia Biliary Tract Diseases Blau Syndrome Blood Platelet Disorders Bohring syndrome Bohring-Opitz Syndrome Bone Diseases Bone Diseases, Developmental Bone Diseases, Metabolic Borjeson-Forssman-Lehman Syndrome Borrelia Infections Brachydactyly - Nystagmus - Cerebellar Ataxia Brachydactyly-Nystagmus-Cerebellar Ataxia Brain Diseases Brain Diseases, Metabolic Brain Diseases, Metabolic, Inborn Brain Tumor Ataxia Breast Implant-Associated Anaplastic Large Cell Lymphoma Bulbo-Spinal Atrophy, X-Linked CAPOS syndrome CRB1 CRELD1 (Cysteine Rich With EGF Like Domains 1) CRMO Carbohydrate Metabolism, Inborn Errors Cardiovascular Abnormalities Cardiovascular Diseases Carotid Artery Diseases Cataract - Ataxia - Deafness Cataract ataxia deafness Cauda Equina Syndrome Caudal Regression Central Nervous System Diseases Central Nervous System Infections Central Nervous System Viral Diseases Cerebellar Ataxia Cerebellar Ataxia - Areflexia - Pes Cavus - Optic Atrophy - Sensorineural Hearing Loss Cerebellar Ataxia - Ectodermal Dysplasia Cerebellar Ataxia - Hypogonadism Cerebellar Ataxia With Peripheral Neuropathy Cerebellar Ataxia and Hypogonadotropic Hypogonadism Cerebellar Ataxia, Cayman Type Cerebellar Diseases Cerebellar ataxia ectodermal dysplasia Cerebral Arterial Diseases Cerebrovascular Disorders Childhood-onset Autosomal Recessive Slowly Progressive Spinocerebellar Ataxia Childhood-onset Hypophosphatasia Cholestasis Cholestasis, Intrahepatic Chromosome 1p36 Deletion Syndrome Chromosome Disorders Chronic Disease Chronic Recurrent Multifocal Osteomyelitis Ciliopathies Cockayne Syndrome Coffin Lowry Syndrome Coffin-Lowry Syndrome Colonic Diseases Congenital Abnormalities Congenital Sucrase-Isomaltase Deficiency Congenital, Hereditary, and Neonatal Diseases and Abnormalities Connective Tissue Diseases Constitutional Mismatch Repair Deficiency (CMMRD) Cornelia de Lange Syndrome Cranial Nerve Diseases Cystinosis Cystinosis, Infantile Nephropathic Cystinosis, Late-Onset Juvenile or Adolescent Nephropathic Type Cytopenia DHDDS Gene Mutations DNA Repair-Deficiency Disorders DNM1 De Lange Syndrome Deafness Deglutition Disorders Dementia Demyelinating Diseases Denys-Drash Syndrome Digestive System Abnormalities Digestive System Diseases Digestive System Fistula Dilated Cardiomyopathy With Ataxia Dimethylglycine Dehydrogenase Deficiency Disease Disease Attributes Disorder of Sex Development, 46,XY Disorders of Excessive Somnolence Disorders of Sex Development Disorders of Unknown Prevalence Dwarfism Dyskinesias Dysostoses Dyssomnias EIEE31 Ear Diseases Early-onset Ataxia With Dementia Early-onset Cerebellar Ataxia With Retained Tendon Reflexes Early-onset Progressive Neurodegeneration - Blindness - Ataxia - Spasticity Early-onset Spastic Ataxia-neuropathy Syndrome Early-onset ataxia with oculomotor apraxia and hypoalbuminemia Emanuel Syndrome Endocrine Gland Neoplasms Endocrine System Diseases Eosinophilic Gastroenteritis Eosinophilic enteropathy Epilepsy and/or Ataxia With Myoclonus as Major Feature Episodic Ataxia Type 1 Episodic Ataxia Type 3 Episodic Ataxia Type 4 Episodic Ataxia Type 5 Episodic Ataxia Type 6 Episodic Ataxia Type 7 Episodic Ataxia Unknown Type Episodic Ataxia With Slurred Speech 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 Esophageal Diseases Esophageal Motility Disorders Exposure to Medications Ataxia Eye Abnormalities Eye Diseases Eye Diseases, Hereditary Familial Paroxysmal Ataxia Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Fibrosis Fish Odor Syndrome Fistula Fragile X Tremor Ataxia Syndrome Fragile X-associated Tremor/Ataxia Syndrome Frasier Syndrome Friedreich Ataxia Frontotemporal Dementia Frontotemporal Lobar Degeneration GAD Ataxia GNB1 Syndrome Gastrointestinal Diseases Genetic Diseases, Inborn Genetic Diseases, X-Linked Gliadin/Gluten Ataxia Glycogen Storage Disease Gonadal Disorders Gram-Negative Bacterial Infections Growth Deficiency and Mental Retardation with Facial Dysmorphism Growth mental deficiency syndrome of Myhre HSPB8 Myopathy Halitosis Harding ataxia Hearing Disorders Hearing Loss Heart Defects, Congenital Heart Diseases Heart Valve Diseases Hematologic Diseases Hemic and Lymphatic Diseases Hemolytic-Uremic Syndrome Hemophagocytic Lymphohistiocytosis Hereditary Central Nervous System Demyelinating Diseases Hereditary Episodic Ataxia Hereditary Myopathy With Early Respiratory Failure Hereditary Sensory and Autonomic Neuropathies Hereditary Sensory and Autonomic Neuropathy Type Ie Hereditary Sensory and Motor Neuropathy Heredodegenerative Disorders, Nervous System Hirschsprung Disease Histiocytosis Histiocytosis, Non-Langerhans-Cell Hyperacusis Hyperacusis (Hyperacousis) Hyperargininemia Hyperglycinemia, Nonketotic Hypersomnolence Disorder Hypertrophic Olivary Degeneration Hypnic Jerking Hypophosphatasia Hypophosphatasia, Adult Hypophosphatasia, Childhood Hypophosphatasia, Perinatal Lethal Idiopathic Gastroparesis Idiopathic Hypersomnia Idiopathic Hypersomnia With Long Sleep Time Idiopathic Hypersomnia Without Long Sleep Time Ileus Immune System Diseases Immunologic Deficiency Syndromes Imprinting Disorders Inclusion Body Myopathy With Early-Onset Paget Disease And Frontotemporal Dementia Inclusion Body Myopathy With Early-onset Paget Disease and Frontotemporal Dementia (IBMPFD) Infantile Hypophosphatasia Infection or Post Infection Ataxia Infections Intellectual Disability Intestinal Diseases Intestinal Fistula Intestinal Obstruction Intestinal Pseudo-Obstruction Intracranial Arterial Diseases Iris Diseases Isolated Aniridia Isolated Congenital Asplenia Isolated Klippel-Feil Syndrome Jansen Type Metaphyseal Chondrodysplasia Juvenile Myasthenia Gravis Juvenile Nephropathic Cystinosis KBG syndrome KCNMA1-Channelopathy Kabuki Syndrome Kawasaki Disease Kennedy Disease Kidney Diseases Kidney Failure, Chronic Kidney Neoplasms Kleine-Levin Syndrome Klippel-Feil Syndrome Kyphosis Labrune Syndrome Lambert Eaton (LEMS) Lambert-Eaton Myasthenic Syndrome Laryngeal Papillomatosis Late-onset Ataxia With Dementia Leber Congenital Amaurosis Leigh Disease Leigh Syndrome Leiomyosarcoma Leiomyosarcoma of Small Intestine Leiomyosarcoma of the Cervix Uteri Leiomyosarcoma of the Corpus Uteri Leukodystrophy Leukodystrophy, Metachromatic Leukoencephalopathies Leukoencephalopathy Brain Calcifications and Cysts Lipid Metabolism Disorders Lipid Metabolism, Inborn Errors Lipidoses Liver Cirrhosis Liver Cirrhosis, Biliary Liver Diseases Lowe Syndrome Lyme Disease Lymphatic Diseases Lymphohistiocytosis, Hemophagocytic Lysosomal Storage Diseases Lysosomal Storage Diseases, Nervous System MAND-MBD5-Associated Neurodevelopmental Disorder Machado-Joseph Disease Machado-Joseph Disease Type 1 Machado-Joseph Disease Type 2 Machado-Joseph Disease Type 3 Malabsorption Syndromes Malan Syndrome Male Urogenital Diseases Mannosidase Deficiency Diseases Marinesco Sjogren Syndrome(Marinesco-Sjogren Syndrome) Maternally Inherited Leigh Syndrome Maternally-inherited Leigh Syndrome Megacolon Memory Disorders Meningitis Meningitis, Viral Mental Disorders Metabolic Diseases Metabolism, Inborn Errors Metachromatic Leukodystrophy (MLD) Metal Metabolism, Inborn Errors Mitochondrial Aminoacyl-tRNA Synthetases Mitochondrial Diseases Mollaret Meningitis Motor Neuron Disease Movement Disorders Moyamoya Disease Mt-aaRS Disorders Mucocutaneous Lymph Node Syndrome Mucolipidoses Mucolipidosis Type 4 Multi-systematic Smooth Muscle Dysfunction Syndrome Multiple Endocrine Neoplasia Multiple Endocrine Neoplasia (MEN) Syndrome Multiple Endocrine Neoplasia Type 1 Multiple Endocrine Neoplasia Type 2 Multiple Endocrine Neoplasia Type 2A Multiple Endocrine Neoplasia Type 2B Multiple Endocrine Neoplasia Type II Multiple Endocrine Neoplasia, Type 3 Multiple Endocrine Neoplasia, Type IV Multiple System Atrophy Multiple System Atrophy, Cerebellar Type Multiple System Atrophy, Parkinsonian Type Muscle Hypertonia Muscle Spasticity Muscular Atrophy - Ataxia - Retinitis Pigmentosa - Diabetes Mellitus Muscular Atrophy, Ataxia, Retinitis Pigmentosa, and Diabetes Mellitus Muscular Atrophy, Spinal Muscular Diseases Muscular Disorders, Atrophic Muscular Dystrophies Muscular Dystrophy, Oculopharyngeal Musculoskeletal Abnormalities Musculoskeletal Diseases Myasthenia Gravis Myasthenia Gravis, Neonatal Myhre Syndrome Myoclonus Myoclonus - Cerebellar Ataxia - Deafness Myoclonus, Cerebellar Ataxia, and Deafness NARP Syndrome Narcolepsy Narcolepsy Without Cataplexy Narcolepsy-cataplexy Neglected Diseases Neoplasms Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Complex and Mixed Neoplasms, Connective and Soft Tissue Neoplasms, Multiple Primary Neoplasms, Muscle Tissue Neoplastic Syndromes, Hereditary Nephropathic Cystinosis Nerve Compression Syndromes Nervous System Diseases Nervous System Malformations Nervous System Neoplasms Neurobehavioral Manifestations Neurocognitive Disorders Neurocutaneous Syndromes Neurodegenerative Diseases Neuroinflammatory Diseases Neurologic Manifestations Neuromuscular Diseases Neuromuscular Junction Diseases Neuromuscular Manifestations Neuronal Ceroid-Lipofuscinoses Neuropathy ataxia and retinitis pigmentosa Nicolaides Baraitser Syndrome Non Progressive Epilepsy and/or Ataxia With Myoclonus as a Major Feature Non-Ketotic Hyperglycinemia Non-hereditary Degenerative Ataxia Nutritional and Metabolic Diseases OPHN1 Syndrome Oculocerebrorenal Syndrome Oculopharyngeal Muscular Dystrophy (OPMD) Odontohypophosphatasia Olivary Degeneration Olivopontocerebellar Atrophy - Deafness Olivopontocerebellar Atrophy V Optic Atrophies, Hereditary Optic Atrophy Optic Atrophy, Autosomal Dominant Optic Nerve Diseases Osteochondrosis Otorhinolaryngologic Diseases Paraneoplastic Syndromes Paraneoplastic Syndromes, Nervous System Paroxysmal Dystonic Choreathetosis With Episodic Ataxia and Spasticity Paroxysmal Tonic Upgaze, Benign Childhood, With Ataxia Pathologic Processes Pathological Conditions, Anatomical Pathological Conditions, Signs and Symptoms Perinatal Lethal Hypophosphatasia Peripheral Nervous System Diseases Peroxisomal Disorders Peters Anomaly Peters Anomaly - Cataract Pitt Hopkins Syndrome Pitt-Hopkins syndrome Polyneuropathies Polyneuropathy - Hearing Loss - Ataxia - Retinitis Pigmentosa - Cataract Polyneuropathy, Hearing Loss, Ataxia, Retinitis Pigmentosa, And Cataract Polyradiculoneuropathy Post Vaccination Ataxia Post-Head Injury Ataxia Post-Stroke Ataxia Posterior Column Ataxia - Retinitis Pigmentosa Postoperative Complications Potocki-Shaffer Syndrome Prenatal Benign Hypophosphatasia Primary Biliary Cirrhosis Primary Dysautonomias Primary Immunodeficiency Diseases Progressive Epilepsy and/or Ataxia With Myoclonus as a Major Feature Proteostasis Deficiencies Pyruvate Dehydrogenase Complex Deficiency Disease Pyruvate Metabolism, Inborn Errors Rare Ataxia Rare Diseases Rare Gastrointestinal Disorders Rare Hereditary Ataxia Rare Inflammatory Bowel Disease Rare Retinal Disorder Recessive Mitochondrial Ataxia Syndrome Rectal Diseases Rectal Fistula Recurrent Respiratory Papillomatosis Recurrent Viral Meningitis Refsum Disease Renal Insufficiency Renal Insufficiency, Chronic Renal Tubular Transport, Inborn Errors Retinal Degeneration Retinal Diseases Retinal Dystrophies Retinitis Pigmentosa SCAR12 SMC1A Truncated Mutations (Causing Loss of Gene Function) SPATA5 Disorder SPATA5L1 Related Disorder STAG1 Gene Mutation Sacral Agenesis Sacral Agenesis Syndrome Sacral defect and anterior sacral meningocele Sarcoma Scheuermann Disease Scleroderma Scleroderma, Diffuse Scleroderma, Systemic Sensation Disorders Sensorimotor neuropathy with ataxia, autosomal dominant Short Bowel Syndrome Signs and Symptoms Signs and Symptoms, Digestive Silver-Russell Syndrome Due to 11p15 Microduplication Silver-Russell Syndrome Due to Imprinting Defect of 11p15 Silver-Russell Syndrome Due to Maternal Uniparental Disomy of Chromosome 11 Skin Diseases Skin Diseases, Vascular Skin and Connective Tissue Diseases Skraban-Deardorff Syndrome Sleep Disorders, Intrinsic Sleep Myoclonus Sleep Wake Disorders Spastic Ataxia Spastic Ataxia - Corneal Dystrophy Spastic Ataxia With Congenital Miosis Spastic ataxia Charlevoix-Saguenay type Spasticity-ataxia-gait Anomalies Syndrome Sphingolipidoses Spinal Bulbar Muscular Atrophy Spinal Cord Diseases Spinal Curvatures Spinal Diseases Spinal Osteochondrosis Spinocerebellar Ataxia - Dysmorphism Spinocerebellar Ataxia - Unknown Spinocerebellar Ataxia 10 Spinocerebellar Ataxia 11 Spinocerebellar Ataxia 12 Spinocerebellar Ataxia 15 Spinocerebellar Ataxia 31 Spinocerebellar Ataxia Type 1 Spinocerebellar Ataxia Type 1 With Axonal Neuropathy Spinocerebellar Ataxia Type 10 Spinocerebellar Ataxia Type 11 Spinocerebellar Ataxia Type 12 Spinocerebellar Ataxia Type 13 Spinocerebellar Ataxia Type 14 Spinocerebellar Ataxia Type 15/16 Spinocerebellar Ataxia Type 16 Spinocerebellar Ataxia Type 17 Spinocerebellar Ataxia Type 18 Spinocerebellar Ataxia Type 19/22 Spinocerebellar Ataxia Type 2 Spinocerebellar Ataxia Type 20 Spinocerebellar Ataxia Type 21 Spinocerebellar Ataxia Type 22 Spinocerebellar Ataxia Type 23 Spinocerebellar Ataxia Type 25 Spinocerebellar Ataxia Type 26 Spinocerebellar Ataxia Type 27 Spinocerebellar Ataxia Type 28 Spinocerebellar Ataxia Type 29 Spinocerebellar Ataxia Type 3 Spinocerebellar Ataxia Type 30 Spinocerebellar Ataxia Type 31 Spinocerebellar Ataxia Type 32 Spinocerebellar Ataxia Type 34 Spinocerebellar Ataxia Type 35 Spinocerebellar Ataxia Type 36 Spinocerebellar Ataxia Type 37 Spinocerebellar Ataxia Type 4 Spinocerebellar Ataxia Type 5 Spinocerebellar Ataxia Type 6 Spinocerebellar Ataxia Type 7 Spinocerebellar Ataxia Type 8 Spinocerebellar Ataxia With Axonal Neuropathy Type 2 Spinocerebellar Ataxia With Epilepsy Spinocerebellar Ataxia With Oculomotor Anomaly Spinocerebellar Ataxia, Autosomal Recessive 7 Spinocerebellar Ataxia, Autosomal Recessive 8 Spinocerebellar Ataxias Spinocerebellar Degenerations Spinocerebellar ataxia 13 Spinocerebellar ataxia 14 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 8 Spinocerebellar ataxia, X-linked, 3 Spinocerebellar ataxia, X-linked, 4 Spinocerebellar ataxia, autosomal recessive 1 Spinocerebellar ataxia, autosomal recessive 3 Spirochaetales Infections Sporadic Adult-onset Ataxia of Unknown Etiology Stickler Syndrome Stickler Syndrome Type 1 Stickler Syndrome Type 2 Stickler syndrome, type 1 Stickler syndrome, type 2 Sucrase-isomaltase deficiency, congenital Sulfatidosis Syndrome Syndromic Aniridia Synucleinopathies TBX4 Syndrome TDP-43 Proteinopathies TUBB3 Mutation Tango2 Telangiectasis Thrombocytopenia Thrombotic Microangiopathies Thyroid Antibody Ataxia Tick-Borne Diseases Toxic Exposure Ataxia Tracheal Papillomatosis Transient Global Amnesia Transient Neonatal Myasthenia Gravis Trimethylaminuria Turcot syndrome Unclassified Autosomal Dominant Spinocerebellar Ataxia Undiagnosed Disorders Urea Cycle Disorders, Inborn Uremia Urogenital Abnormalities Urogenital Diseases Urogenital Neoplasms Urologic Diseases Urologic Neoplasms Uveal Diseases VCP Disease Vascular Diseases Vasculitis Vector Borne Diseases Virus Diseases Vitamin B12 Deficiency Ataxia WAGR Syndrome WOREE (WWOX-related Epileptic Encephalopathy Warburg Micro Syndrome Warburg Sjo Fledelius syndrome White Sutton Syndrome Wiedemann-Steiner Syndrome Williams Syndrome Wilms Tumor Wolf-Hirschhorn Syndrome X-Linked Intellectual Disability X-linked Cerebellar Ataxia X-linked Intellectual Disability - Ataxia - Apraxia X-linked Non Progressive Cerebellar Ataxia X-linked Progressive Cerebellar Ataxia X-linked Spinocerebellar Ataxia Type 3 X-linked Spinocerebellar Ataxia Type 4 ZMYND11

Sex eligibility

All sexes

Study type

Observational

Primary location

Online Patient Enrollment System, Sydney, Australia

Loading trial locations.

About this study

CoRDS collects contact, sociodemographic and health information about participants. This information is entered into CoRDS and linked to a unique coded identifier. Below are some examples of information requested on the Questionnaire that will be entered into CoRDS:

  • Contact information: Name, Mailing Address, Phone Number, Email Address
  • Sociodemographic information: Date of Birth, Place of Birth, Sex, Gender, Ethnicity
  • Health information: Family History, Information related to Diagnosis

De-identified information in CoRDS will be made available to researchers, if they have obtained approval for their research project from (1) the Institutional Review Board (IRB) at the researcher's institution and (2) a panel of experts.

A subset of de-identified information collected from each profile may be shared with certain other databases. This is done in order to help improve understanding of rare diseases, to avoid the duplication of efforts and to collaborate with existing research efforts with organizations dedicated to rare diseases.

Participants may elect to have their information shared with patient advocacy groups (PAGs) representing individuals with rare or uncommon diseases who have partnered with CoRDS. The PAG will sign an agreement stating that they will not use the information for Research purposes. CoRDS personnel will not be held responsible for the use of information by the PAG.

The CoRDS Registry will not be paid by Researchers, Other Patient Registries or Patient Advocacy Groups (PAGs) for access to information in CoRDS.

If a parent/LAR consents on behalf of a minor, CoRDS will contact the participant when he or she reaches the age of 18 in order to obtain consent. If this consent is not obtained in a timely manner, the participant will be withdrawn from CoRDS.

CoRDS contacts participants annually to confirm continued interest in participation in CoRDS, and to request that participants update the information they have provided.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Diagnosis of a rare disease, a disease of unknown prevalence, undiagnosed or an unaffected carrier of a rare/uncommon disease

Exclusion criteria

  • Diagnosis of a disease which is not rare

Treatment and study plan

Primary outcomes

  1. To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases.

    Time frame: 100 years

Study contacts

Contact information is provided by the study sponsor or research team.

CoRDS Team

CONTACT

[email protected]

1-877-658-9192

Sponsors and collaborators

Lead sponsor

Sanford Health

Other

Collaborators

  • 1p36 Deletion Support and Awareness
  • 4p- Support Group
  • ACTA2 Alliance
  • ANA-Aniridia North America
  • ARG1D Foundation
  • Acrodysostosis Support and Research
  • All Things Kabuki
  • Alstrom United Kingdom
  • American Behcet's Disease Association
  • American Multiple Endocrine Neoplasia Support
  • Aniridia North America
  • Athymia
  • Atypical Hemolytic Uremic Syndrome Foundation
  • Autoinflammatory Alliance
  • BARE Inc
  • BLFS Incorporate
  • Batten Disease Support and Research Association
  • Beyond Batten Disease Foundation
  • Bohring-Opitz Syndrome Foundation, INC
  • Breast Implant Victim Advocates
  • CACNA1H Alliance
  • CRELD1 Warriors
  • CRMO Foundation
  • CURE HSPB8 Myopathy
  • Cauda Equina Foundation, Inc
  • Cockayne Syndrome Network (Share and Care)
  • Coffin Lowry Syndrome Foundation
  • Cornelia de Lange Syndrome Foundation
  • Cure Blau Syndrome Foundation
  • Cure DHDDS
  • Cure Mito Foundation
  • Cure Mucolipidosis
  • Cure VCP Disease,INC
  • CureARS A NJ Nonprofit Corporation
  • Curing Retinal Blindness Foundation
  • Cystinosis Research Foundation
  • DNM1 Families
  • Endosalpingiosis Foundation, Inc
  • FOD Support
  • GNB1 Advocacy Group
  • Global DARE Foundation
  • HSAN1E Society
  • Hope for PDCD Foundation
  • Hyperacusis Research Limited
  • Hypersomnia Foundation
  • Hypertrophic Olivary Degeneration Association (HODA)
  • Hypnic Jerk-Sleep Myoclonus Support Group
  • IMBS Alliance
  • ISMRD - Beta Mannosidosis
  • International Association for Muscle Glycogen Storage Disease (IamGSD)
  • International Foundation for Gastrointestinal Disorders
  • International Sacral Agenesis/Caudal Regression Association (ISACRA)
  • International Society of Mannosidosis and Related Disorders
  • International WAGR Syndrome Association
  • Jansen's Foundation
  • KBG Syndrome Association
  • KCNMA1 Channelopathy International Advocacy Foundation
  • Kabuki Syndrome Network
  • Kawasaki Disease Foundation
  • Kawasaki Disease Foundation Australia
  • Kennedy's Disease Association
  • Kleine-Levin Syndrome Foundation
  • Klippel-Feil Syndrome Alliance
  • Klippel-Feil Syndrome Freedom
  • Krishnan Family Foundation
  • Lambert Eaton (LEMS) Family Association
  • Leiomyosarcoma Direct Research Foundation
  • Life with LEMS Foundation
  • Lowe Syndrome Association
  • MANDKind Foundation
  • ML4 Foundation
  • MLD Foundation
  • MSA United Research Consortium
  • Maple Syrup Urine Disease Family Support Group
  • Marinesco-Sjogren Syndrome Support Group - NORD
  • Moyamoya Foundation
  • Mucolipidosis Type IV (ML4) Foundation
  • Myhre Syndrome Foundation
  • National Ataxia Foundation
  • National Organization for Disorders of the Corpus Callosum (NODCC)
  • Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation
  • Noah's Hope - Hope4Bridget Foundation
  • Non- Ketotic Hyperglycinemia (NKH) Crusaders
  • OPMD Association
  • PROS Foundation
  • People with Narcolepsy 4 People with Narcolepsy (PWN4PWN)
  • Pitt Hopkins Research Foundation
  • Project Sebastian
  • Recurrent Meningitis Association
  • Recurrent Respiratory Papillomatosis Foundation
  • Remember the Girls
  • Riaan Research Initiative
  • SHINE-Syndrome Foundaion
  • SKDEAS Foundation
  • SMC1A Epilepsy Foundation
  • SPATA Foundation
  • SPG Research Foundation
  • STAG1 Gene Foundation
  • Scheuermann's Disease Fund
  • Smith-Kingsmore Syndrome Foundation
  • Soft Bones Incorporated
  • Stickler Involved People
  • TBX4Life
  • TUBB3 Foundation
  • Tango2 Research Foundation
  • Taylor's Tale Foundation
  • Team Telomere
  • Team4Travis
  • The Alagille Syndrome Alliance
  • The Charlotte & Gwenyth Gray Foundation
  • The Cute Syndrome Foundation
  • The Foundation for Casey's Cure
  • The LCC Foundation
  • The Maddi Foundation
  • The Malan Syndrome Foundation
  • The PBCers Organization
  • Transient Global Amnesia Project
  • WWOX Foundation
  • Warburg Micro Research Foundation
  • White Sutton Syndrome Foundation
  • Wiedemann-Steiner Syndrome Foundation
  • Zmynd11 Gene Disorder

Registry information

Official study title

Coordination of Rare Diseases at Sanford

Acronym: CoRDS

Important dates

Study start
2010
Primary completion
2100
Study completion
2100
First posted
Feb 15, 2013
Registry last updated
May 29, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.