Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford (CoRDS)
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT01793168 |
Recruitment Status :
Recruiting
First Posted : February 15, 2013
Last Update Posted : December 15, 2021
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Condition or disease |
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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 |
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.
Study Type : | Observational [Patient Registry] |
Estimated Enrollment : | 20000 participants |
Observational Model: | Case-Only |
Time Perspective: | Prospective |
Target Follow-Up Duration: | 100 Years |
Official Title: | Coordination of Rare Diseases at Sanford |
Actual Study Start Date : | July 2010 |
Estimated Primary Completion Date : | December 2100 |
Estimated Study Completion Date : | December 2100 |

- 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 ]
Biospecimen Retention: None Retained

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
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

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01793168
Contact: CoRDS Team | 1-877-658-9192 | cords@sanfordhealth.org |
United States, South Dakota | |
Sanford Health | Recruiting |
Sioux Falls, South Dakota, United States, 57104 | |
Contact: CoRDS Team 877-658-9192 cords@sanfordhealth.org | |
Principal Investigator: Benjamin Forred, MBA | |
Australia | |
Online Patient Enrollment System | Recruiting |
Sydney, Australia | |
Contact: CoRDS Team 1-877-6589192 cords@sanfordhealth.org |
Responsible Party: | Sanford Health |
ClinicalTrials.gov Identifier: | NCT01793168 |
Other Study ID Numbers: |
03-10-014 Hypersomnia Foundation ( Registry Identifier: Hypersomnia Registry ) National Ataxia Foundation ( Registry Identifier: Ataxia Registry ) 4p- Support Group ( Registry Identifier: 4p-/Wolfhirschhorn Syndrome Registry ) CdLS Foundation ( Registry Identifier: Cornelia de Lange Syndrome Registry ) Hyperacusis Research Limited ( Registry Identifier: Hyperacusis Registry ) Kabuki Syndrome Network ( Registry Identifier: Kabuki Syndrome Registry ) Kawasaki Disease Foundation ( Registry Identifier: Kawasaki Disease Registry ) Klippel-Feil Syndrome Freedom ( Registry Identifier: Klippel-Feil Syndrome Registry ) Leiomyosarcoma Direct Research ( Registry Identifier: Leiomyosarcoma Registry ) MSS Support Group ( Registry Identifier: Marinesco-Sjogren Syndrome Registry ) ML4 Foundation ( Registry Identifier: Mucolipidosis Type IV (ML4) Registry ) Stickler Involved People ( Registry Identifier: Stickler Syndrome Registry ) IWSA ( Registry Identifier: WAGR Syndrome Registry ) Soft Bones ( Registry Identifier: Hypophosphatasia Registry ) PWN4PWN ( Registry Identifier: Narcolepsy Registry ) aHUS ( Registry Identifier: aHUS Registry ) Klippel-Feil Syndrome Alliance ( Registry Identifier: KFS Registry ) American MEN Support ( Registry Identifier: Mulitiple Endocrine Neoplasia Registry ) Kleine-Levin Syndrome ( Registry Identifier: Kleine-Levin Syndrome Registry ) All Things Kabuki ( Registry Identifier: Kabuki Syndrome Registry ) WSS Foundation ( Registry Identifier: Wiedemann-Steiner Syndrome Registry ) BIVA ( Registry Identifier: Brest Implant-Associated ALCL Registry ) ABDA ( Registry Identifier: American Bechet's Disease Association Registry ) PROS Foundation (HLH) ( Registry Identifier: Hemophagocytic Lymphohistiocytosis (HLH) Registry ) Alagille Syndrome Association ( Registry Identifier: Alagillle Syndrome Registry ) Cure VCP Disease, Inc. ( Registry Identifier: IBMPFD Registry ) Lowe Syndrome Association ( Registry Identifier: Lowe Syndrome Registry ) Pitt Hopkins ( Registry Identifier: Pitt Hopkins Registry ) Cure Batten Disease ( Registry Identifier: Batten Disease Registry ) Hypnic Jerk/Sleep Myoclonus ( Registry Identifier: Hypnic Jerk/Sleep Myoclonus Registry ) 1p36 DSA ( Registry Identifier: 1p36 Deletion Syndrome Registry ) Jansen Foundation ( Registry Identifier: The Jansen Foundation Registry ) Share and Care Network ( Registry Identifier: Cockayne Syndrome Registry ) CRMO ( Registry Identifier: CRMO Registry ) The Malan Syndrome Foundation ( Registry Identifier: Malan Syndrome Registry ) HSAN1E Society ( Registry Identifier: HSAN1E Registry ) Alstrom United Kingdomg ( Registry Identifier: Alstrom United Kingdom Registry ) Athymia ( Registry Identifier: Athymia Registry ) CRB1 Foundation ( Registry Identifier: Curing Retinal Blindness Foundation Registry ) DNM1 Families ( Registry Identifier: DNM1 Mutations Registry ) Global DARE Foundation ( Registry Identifier: Global DARE Foundation Registry ) KCIAF ( Registry Identifier: KCNMA1 Channelopathy International Advocacy Foundation Registry ) MSUD FSG ( Registry Identifier: Maple Syrup Urine Disease Family Support Group Registry ) IamGSD ( Registry Identifier: International Association for Muscle Glycogen Storage Disease Registry ) Myhre Syndrome Foundation ( Registry Identifier: Myhre Syndrome Foundation Registry ) NCBRS ( Registry Identifier: Nicolaides Baraitser Syndrome Worldwide Foundation Registry ) PBCers Organization ( Registry Identifier: PBCers Organization Registry ) DBA - PFIC Network ( Registry Identifier: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc Registry ) Remember the Girls ( Registry Identifier: Remember the Girls - X-Linked Carriers Registry ) RRPF ( Registry Identifier: Recurrent Respiratory Papillomatosis Foundation Registry ) SKS Foundation ( Registry Identifier: Smith-Kingsmore Syndrome Foundation Registry ) SPG15 Research Foundation ( Registry Identifier: SPG Research Foundation Registry ) Team Telomere ( Registry Identifier: Team Telomere Registry ) TGA Project ( Registry Identifier: Transient Global Amnesia Project Registry ) The Cute Syndrome Foundation ( Registry Identifier: The Cute Syndrome Foundation Registry ) WSS Foundation ( Registry Identifier: White Sutton Syndrome Foundation Registry ) Zmynd11 Gene Disorder ( Registry Identifier: Zmynd11 Gene Disorder Registry ) SPG11 and SPG15 ( Registry Identifier: The Maddi Foundation Registry ) Endosalpingiosis Foundation ( Registry Identifier: Endosalpingiosis Foundation, Inc Registry ) Cauda Equina Foundation ( Registry Identifier: Cauda Equina Foundation, Inc Registry ) Tango2 Research Foundation ( Registry Identifier: Tango2 Research Foundation Registry ) SMC1A Epilepsy ( Registry Identifier: SMC1A Epilepsy Foundation Registry ) IFFGD ( Registry Identifier: International Foundation for Gastrointestinal Disorders ) Noah's Hope - Hope4Bridget ( Registry Identifier: Noah's Hope - Hope4Bridget Foundation Registry ) Project Sebastian ( Registry Identifier: Project Sebastian Registry ) ISACRA ( Registry Identifier: International Sacral Agenesis/Caudal Regression Association (SACRA) ) Scheuermann's Disease Fund ( Registry Identifier: Scheuermann's Disease Fund Registry ) BDSRA ( Registry Identifier: Batten Disease Support and Research Association ) Kennedy's Disease Assocation ( Registry Identifier: Kennedy's Disease Association Registry ) Cystinosis Research Foundation ( Registry Identifier: Cystinosis Research Foundation Registry ) Cure Mito Foundation ( Registry Identifier: Cure Mito Foundation Registry ) Warburg Micro Research ( Registry Identifier: Warburg Micro Research Foundation Registry ) Riaan Research Initiative ( Registry Identifier: Riaan Research Initiative Registry ) Cure Mucolipidosis ( Registry Identifier: Cure Mucolipidosis Registry ) CureARS A NJ Nonprofit ( Registry Identifier: CureARS Registry ) |
First Posted: | February 15, 2013 Key Record Dates |
Last Update Posted: | December 15, 2021 |
Last Verified: | November 2021 |
Individual Participant Data (IPD) Sharing Statement: | |
Plan to Share IPD: | Yes |
Plan Description: | Deidentified participant data is shared with contracted patient advocacy groups for non-research purposes. Parties interested in accessing data are welcome to apply (cost-free) at http://www.sanfordresearch.org/cords/researchers/. |
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) |
Osteomyelitis Lyme Disease Meningitis, Viral Neoplasms Lymphoma, Large-Cell, Anaplastic Myasthenia Gravis 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 Sjogren's Syndrome Muscular Diseases Muscle Weakness Arthrogryposis Cockayne Syndrome Mucolipidoses Craniofacial Abnormalities Osteochondrodysplasias Arthritis Silver-Russell Syndrome Klippel-Feil Syndrome Scheuermann Disease Brachydactyly Inflammatory Bowel Diseases |