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

Coordination of Rare Diseases at Sanford

Sponsors	Lead Sponsor: Sanford Health Collaborator: 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 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 Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc 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
Source	Sanford Health
Brief 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.

Sponsors

Collaborator: 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
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
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc
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

Source

Sanford Health

Brief 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.

Detailed Description

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.

Overall Status

Recruiting

Start Date

2010-07-01

Completion Date

2100-12-01

Primary Completion Date

2100-12-01

Study Type

Observational [Patient Registry]

Primary Outcome

Measure	Time Frame
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.	100 years

Enrollment

20000

Condition	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 Loss of Function Epilepsy
Eligibility	Sampling Method: Non-Probability Sample Criteria: 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 Gender: All Minimum Age: N/A Maximum Age: N/A Healthy Volunteers: No

Condition

Eligibility

Sampling Method:

Non-Probability Sample

Criteria:

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

Gender:

All

Minimum Age:

N/A

Maximum Age:

N/A

Healthy Volunteers:

Overall Contact

Last Name: CoRDS Team

Phone: 1-877-658-9192

Email: [email protected]

Location

Facility:	Status:	Contact:	Investigator:
Sanford Health \| Sioux Falls, South Dakota, 57104, United States	Recruiting	CoRDS Team 877-658-9192 [email protected]	Benjamin Forred, MBA Principal Investigator
Online Patient Enrollment System \| Sydney, Australia	Recruiting	CoRDS Team 1-877-6589192 [email protected]

Location Countries	Australia United States
Verification Date	2020-07-01
Responsible Party	Type: Sponsor
Keywords	Rare Diseases Neglected Diseases Orphan Diseases Rare Disease Research Registries WAGR Syndrome Ataxia Cornelia de Lange Syndrome Stickler Syndrome Ataxia Telangiectasia Kawasaki Disease Batten Disease Mucolipidosis IV Klippel-Feil Syndrome Multiple Endocrine Neoplasia Atypical Hemolytic Uremic Syndrome Undiagnosed Uncommon Disease Kabuki Syndrome Hypersomnia Hyperacusis Kleine-Levin Syndrome Marinesco-Sjogren Syndrome Leiomyosarcoma 4p-/Wolf-Hirschhorn Syndrome Hypophosphatasia Narcolepsy Wiedermann-Steiner Syndrome Breast Implant-Associated Anaplastic Large Cell Lymphoma Autoimmune/inflammatory Syndrome Induced by Adjuvants (ASIA) Hemophagocytic Lymphohistiocytosis (HLH) 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 metaphyseal chondrodysplasia Cockayne Syndrome Chronic recurrent multifocal osteomyelitis (CRMO) Malan syndrome Hereditary Sensory and Autonomic Neuropathy
Has Expanded Access	No
Condition Browse	Meningococcal Infections Osteomyelitis Lyme Disease Meningitis, Viral Neoplasms Lymphoma, Large-Cell, Anaplastic Leiomyosarcoma Papilloma Endocrine Gland Neoplasms Multiple Endocrine Neoplasia Multiple Endocrine Neoplasia Type 1 Multiple Endocrine Neoplasia Type 2a WAGR Syndrome Multiple Endocrine Neoplasia Type 2b Denys-Drash Syndrome Muscle Spasticity Muscular Diseases Sjogren's Syndrome Arthrogryposis Muscle Weakness Mucolipidoses Cockayne Syndrome Craniofacial Abnormalities Osteochondrodysplasias Arthritis Silver-Russell Syndrome Klippel-Feil Syndrome Brachydactyly Scheuermann Disease Inflammatory Bowel Diseases Gastroparesis Gastroenteritis Esophageal Achalasia Digestive System Diseases Gastrointestinal Diseases Short Bowel Syndrome Rectal Fistula Liver Cirrhosis, Biliary Hirschsprung Disease Alagille Syndrome Eosinophilic Esophagitis Intestinal Pseudo-Obstruction Behcet Syndrome Hearing Loss Deafness Hearing Loss, Sensorineural Hyperacusis Dementia Epilepsy Peripheral Nervous System Diseases Ataxia Cerebellar Ataxia Meningitis Muscular Atrophy Polyneuropathies Myasthenia Gravis Intellectual Disability Craniocerebral Trauma Narcolepsy Spinocerebellar Ataxias Spinocerebellar Degenerations Multiple System Atrophy Shy-Drager Syndrome Frontotemporal Dementia Aphasia, Primary Progressive Pick Disease of the Brain Friedreich Ataxia Blindness Apraxias Leukoencephalopathies Disorders of Excessive Somnolence Ataxia Telangiectasia Cataplexy Dysarthria Myoclonus Nystagmus, Pathologic Amnesia Williams Syndrome Optic Atrophy Hypersomnolence, Idiopathic Machado-Joseph Disease Leigh Disease Alstrom Syndrome Amnesia, Transient Global Kleine-Levin Syndrome Oculocerebrorenal Syndrome De Lange Syndrome Cauda Equina Syndrome Hereditary Sensory and Autonomic Neuropathies Refsum Disease Cogan Syndrome Optic Atrophy, Autosomal Dominant Olivopontocerebellar Atrophies Meningocele Myasthenia Gravis, Neonatal Cataract Retinitis Retinitis Pigmentosa Leber Congenital Amaurosis Aniridia Retinal Diseases Eye Diseases, Hereditary Retinal Detachment Corneal Opacity Eye Abnormalities Hemolytic-Uremic Syndrome Atypical Hemolytic Uremic Syndrome Frasier Syndrome Cardiomyopathies Telangiectasis Cardiomyopathy, Dilated Mucocutaneous Lymph Node Syndrome Lymphohistiocytosis, Hemophagocytic Congenital Abnormalities Glycogen Storage Disease Hypophosphatasia Ectodermal Dysplasia Beckwith-Wiedemann Syndrome Wolf-Hirschhorn Syndrome Abnormalities, Multiple Connective Tissue Diseases Vitamin B 12 Deficiency Vitamin E Deficiency Hypogonadism Addison Disease Disease Syndrome Atrophy Fistula Rare Diseases Hemolysis Nerve Degeneration Channelopathies Uniparental Disomy
Acronym	CoRDS
Patient Data	Yes
Study Design Info	Observational Model: Case-Only Time Perspective: Prospective

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

Coordination of Rare Diseases at Sanford

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