Clinical Trials

 

Coordination of Rare Diseases at Sanford

Study Type: Observational [Patient Registry]
Sponsors: Sanford Health, American Behcet's Disease Association, Remember the Girls, Smith-Kingsmore Syndrome Foundation, American Multiple Endocrine Neoplasia Support, Scheuermann's Disease Fund, Stickler Involved People, International Foundation for Gastrointestinal Disorders, The Maddi Foundation, Klippel-Feil Syndrome Freedom, People with Narcolepsy 4 People with Narcolepsy (PWN4PWN), White Sutton Syndrome Foundation, Endosalpingiosis Foundation, Inc, Beyond Batten, Soft Bones Incorporated, Atypical Hemolytic Uremic Syndrome Foundation, National Ataxia Foundation, Hypnic Jerk-Sleep Myoclonus Support Group, Myhre Syndrome Foundation, International Sacral Agenesis/Caudal Regression Association (ISACRA), FOD Support, Klippel-Feil Syndrome Alliance, Kabuki Syndrome Network, The Alagille Syndrome Alliance, Tango2 Research Foundation, CRMO Foundation, Project Sebastian, Life with LEMS Foundation, Cockayne Syndrome Network (Share and Care), Noah's Hope - Hope4Bridget Foundation, Cauda Equina Foundation, Inc, Team Telomere, Transient Global Amnesia Project, HSAN1E Society, Wiedemann-Steiner Syndrome Foundation, Jansen's Foundation, PROS Foundation, Autoinflammatory Alliance, Breast Implant Victim Advocates, Curing Retinal Blindness Foundation, Lowe Syndrome Association, The Charlotte & Gwenyth Gray Foundation, Recurrent Respiratory Papillomatosis Foundation, The PBCers Organization, Hyperacusis Research Limited, ML4 Foundation, Kawasaki Disease Foundation, SPG Research Foundation, The Malan Syndrome Foundation, Recurrent Meningitis Association, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation, Bohring-Opitz Syndrome Foundation, INC, Zmynd11 Gene Disorder, Kawasaki Disease Foundation Australia, DNM1 Families, International Association for Muscle Glycogen Storage Disease (IamGSD), Hypersomnia Foundation, SMC1A Epilepsy Foundation, International WAGR Syndrome Association, Global DARE Foundation, Leiomyosarcoma Direct Research Foundation, Kleine-Levin Syndrome Foundation, 1p36 Deletion Support and Awareness, Maple Syrup Urine Disease Family Support Group, Athymia, Cure VCP Disease,INC, Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc, Marinesco-Sjogren Syndrome Support Group - NORD, 4p- Support Group, KCNMA1 Channelopathy International Advocacy Foundation, Cystinosis Research Foundation, All Things Kabuki, The Cute Syndrome Foundation, Mucolipidosis Type IV (ML4) Foundation, Cornelia de Lange Syndrome Foundation, Pitt Hopkins Research Foundation, Alstrom United Kingdom
Participants: 20000
Authors
Benjamin Forred
Abstract
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.
* Consult with your doctor before enrolling in clinical trials.
Facilities
Online Patient Enrollment System - Recruiting
Sydney, Australia
Sanford Health - Recruiting
Sioux Falls, United States of America
Contacts
Primary
CoRDS Team
cords@sanfordhealth.org
1-877-658-9192
Eligibilities
Sex: All
Healthy Volunteers: No
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
Relevant Conditions

Achalasia, Achondrogenesis, Acro-Pectoro-Renal Field Defect, Acromesomelic Dysplasia, Acromesomelic Dysplasia Campailla Martinelli Type, Acromesomelic Dysplasia Hunter Thompson Type, Acromesomelic Dysplasia Maroteaux Type, Acromicric Dysplasia, Acropectoral Syndrome, Acute Cerebellar Ataxia, Adams-Oliver Syndrome, Addison's Disease, Adrenocortical Carcinoma, Adult Soft Tissue Sarcoma, Alagille Syndrome, Alstrom Syndrome, Amaurosis Fugax, Amyotonia Congenita, Anaplastic Large Cell Lymphoma, Anaplastic Thyroid Cancer, Andersen Disease, Anemia, Aniridia, Aortic Valve Stenosis, Aplasia Cutis Congenita, Apraxia, Arthritis, Arthrogryposis Multiplex Congenita, Arthrogryposis Multiplex Congenita Neurogenic Type, Ataxia-Telangiectasia, Autonomic Neuropathy, Beckwith-Wiedemann Syndrome, Behcet Disease, Benign Familial Neonatal Seizures, Biliary Hypoplasia, Brachydactyly, Brachydactyly Mononen Type, Brachydactyly Type B, Brown Syndrome, CACH Syndrome, Cardiomyopathy, Cardiomyopathy Hypogonadism Metabolic Anomalies, Cataract, Cataract Ataxia Deafness, Cerebellar Agenesis, Cerebellar Degeneration, Cerebellar Multiple System Atrophy, Cholestasis, Chondrodystrophy, Chronic Kidney Disease, Chronic Obstructive Pulmonary Disease, Chronic Recurrent Multifocal Osteomyelitis, Cirrhosis, Clouston Syndrome, Coats Disease, Cockayne Syndrome, Cockayne Syndrome Type 1, Cockayne Syndrome Type 2, Cogan's Syndrome, Colorectal Cancer, Congenital Contractures, Congenital Insensitivity to Pain with Anhidrosis, Congenital Unilateral Pulmonary Hypoplasia, Corneal Dystrophy and Perceptive Deafness, Cornelia De Lange Syndrome, Cytoplasmic Body Myopathy, D-Minus Hemolytic Uremic Syndrome, D-Plus Hemolytic Uremic Syndrome, Deafness Craniofacial Syndrome, Deafness Hypogonadism Syndrome, Dementia, Denys-Drash Syndrome, Developmental Dysphasia Familial, Dilated Cardiomyopathy, Dilated Cardiomyopathy with Hypergonadotropic Hypogonadism, Drowsiness, Drug Induced Dyskinesia, Dry Eye Syndrome, Dry Mouth, Dysarthria, Ectodermal Dysplasia Neurosensory Deafness, Ectodermal Dysplasias, Eosinophilic Esophagitis, Epilepsy, Epilepsy with Myoclonic-Atonic Seizures, Esophagitis, Excessive Daytime Sleepiness, Familial Deafness, Familial Dysautonomia, Familial Transthyretin Amyloidosis, Fountain Syndrome, Frasier Syndrome, Friedreich Ataxia, Frontonasal Dysplasia Klippel Feil Syndrome, Frontotemporal Dementia, Gastrointestinal Fistula, Gastroparesis, Genital Dwarfism, Gigantism, Glycogen Storage Disease Type 5, Hajdu-Cheney Syndrome, Harding Ataxia, Hearing Loss, Hemolysis, Hemolytic Anemia, Hemolytic-Uremic Syndrome, Hemophagocytic Lymphohistiocytosis, Hereditary Sensory Neuropathy Type 1, Hereditary Sensory and Autonomic Neuropathy Type 2, Hernia, Hirschsprung Disease, Histiocytosis, Hypogonadism, Hypogonadotropic Hypogonadism, Hypophosphatasia, Infantile Axonal Neuropathy, Infantile Refsum Disease, Intersex, Intestinal Pseudo-Obstruction, Isolated Hypogonadotropic Hypogonadism, Kabuki Syndrome, Kawasaki Disease, Kleine Levin Syndrome, Klippel-Feil Syndrome, Kohler Disease, Kyphosis, Late-Onset Retinal Degeneration, Leber Congenital Amaurosis, Leigh Syndrome, Leiomyosarcoma, Leukodystrophy, Low Blood Pressure, Lowe Syndrome, Lyme Disease, Macroglossia, Malnutrition, Marinesco Sjogren Syndrome, Medullary Thyroid Carcinoma, Memory Loss, Meningitis, Meningocele, Metabolic Syndrome, Mucolipidosis 3, Mucolipidosis Type 4, Multiple Endocrine Neoplasia, Multiple Endocrine Neoplasia Type 1, Multiple Endocrine Neoplasia Type 2, Multiple Epiphyseal Dysplasia, Multiple System Atrophy, Muscle Atrophy, Myasthenia Gravis, Myoclonic Epilepsy, Myoclonus Epilepsy Partial Seizure, Myotonia Congenita, Myotonic Dystrophy Type 2, Narcolepsy, Necrosis, Necrotizing Vasculitis, Neonatal Onset Multisystem Inflammatory Disease, Neuroretinitis, Non-Hodgkin Lymphoma, Non-Langerhans-Cell Histiocytosis, Oculomotor Apraxia Cogan Type, Olivopontocerebellar Atrophy, Optic Nerve Atrophy, Orthostatic Hypotension, Osteomyelitis, Osteomyelitis in Children, Paget Disease of the Bone, Paget Disease of the Breast, Paget's Disease of Bone, Palatal Myoclonus, Paramyotonia Congenita, Parkinson's Disease, Peripheral Neuropathy, Pheochromocytoma, Phosphoglycerate Mutase Deficiency, Pitt-Hopkins Syndrome, Pompe Disease, Primary Biliary Cirrhosis, Primary Orthostatic Tremor, Primary Progressive Aphasia, Progeria, Progressive External Ophthalmoplegia, Pulmonary Valve Stenosis, Refsum Disease, Renal Cell Carcinoma, Reticulohistiocytoma, Retinal Detachment, Retinitis Pigmentosa, Retinitis Pigmentosa-Deafness, Retinopathy Pigmentary Mental Retardation, Rheumatoid Arthritis, Rommen Mueller Sybert Syndrome, Russell-Silver Dwarfism, SAPHO Syndrome, Schwartz-Jampel Syndrome, Sclerosing Cholangitis, Seizures, Short Bowel Syndrome, Sialidosis, Sjogren Syndrome, Spasticity, Spinal Muscular Atrophy, Spinal Muscular Atrophy Type 1, Spinal Muscular Atrophy Type 2, Spinal Muscular Atrophy with Arthrogryposis, Spinocerebellar Ataxia, Spinocerebellar Ataxia Type 1, Spinocerebellar Ataxia Type 2, Spinocerebellar Ataxia Type 3, Spinocerebellar Ataxia Type 4, Spinocerebellar Ataxia Type 5, Spinocerebellar Ataxia Type 6, Spinocerebellar Ataxia Type 7, Spinocerebellar Degeneration and Corneal Dystrophy, Spondyloepiphyseal Dysplasia, Stargardt Macular Degeneration, Stickler Syndrome, Striatonigral Degeneration Infantile, Telangiectasia, Thrombocytopenia, Total Intestinal Aganglionosis, Transient global amnesia, Uveitis, Vasculitis, Viral Gastroenteritis, Vitamin B12 Deficiency Anemia, WAGR Syndrome, Williams Syndrome, Wilms Tumor, Wolf-Hirschhorn Syndrome, Wolf-Hirschorn Syndrome, X-Linked Spondyloepiphyseal Dysplasia Tarda

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