ClinicalTrials.gov record
Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford
ClinicalTrials.gov ID: NCT01793168
Public ClinicalTrials.gov record NCT01793168. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Coordination of Rare Diseases at Sanford
Study identification
- NCT ID
- NCT01793168
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Lead sponsor
- Sanford Health
- Other
- Enrollment
- 20,000 participants
Conditions and interventions
Conditions
- 4p Deletion Syndrome, Non-Wolf-Hirschhorn Syndrome
- 4p16.3 Microduplication Syndrome
- Acquired Myasthenia Gravis
- Addison Disease
- Adult Hypophosphatasia
- Aniridia
- Aniridia - Absent Patella
- Aniridia - Cerebellar Ataxia - Intellectual Disability
- Aniridia - Ptosis - Intellectual Disability - Familial Obesity
- Aniridia - Renal Agenesis - Psychomotor Retardation
- Aniridia-intellectual Disability Syndrome
- Autosomal Recessive Stickler Syndrome
- Axenfeld-Rieger Syndrome
- Beckwith-Wiedemann Syndrome
- Bohring-Opitz Syndrome
- Childhood-onset Hypophosphatasia
- Cornelia De Lange Syndrome
- Denys-Drash Syndrome
- Disorders of Unknown Prevalence
- Emanuel Syndrome
- Frasier Syndrome
- Hyperacusis (Hyperacousis)
- Hypersomnolence Disorder
- Hypophosphatasia
- Idiopathic Hypersomnia
- Idiopathic Hypersomnia With Long Sleep Time
- Idiopathic Hypersomnia Without Long Sleep Time
- Infantile Hypophosphatasia
- Isolated Aniridia
- Isolated Klippel-Feil Syndrome
- Juvenile Myasthenia Gravis
- Kabuki Syndrome
- Kawasaki Disease
- Kleine-Levin Syndrome
- Leiomyosarcoma
- Leiomyosarcoma of Small Intestine
- Leiomyosarcoma of the Cervix Uteri
- Leiomyosarcoma of the Corpus Uteri
- Lyme Disease
- Marinesco Sjogren Syndrome(Marinesco-Sjogren Syndrome)
- Mucolipidosis Type 4
- Myasthenia Gravis
- Narcolepsy Without Cataplexy
- Narcolepsy-cataplexy
- Odontohypophosphatasia
- Perinatal Lethal Hypophosphatasia
- Peters Anomaly
- Peters Anomaly - Cataract
- Potocki-Shaffer Syndrome
- Prenatal Benign Hypophosphatasia
- Rare Disorders
- 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
- 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
- Sporadic Adult-onset Ataxia of Unknown Etiology
- Stickler Syndrome
- Stickler Syndrome Type 1
- Stickler Syndrome Type 2
- Syndromic Aniridia
- Thyroid Antibody Ataxia
- Toxic Exposure Ataxia
- Transient Neonatal Myasthenia Gravis
- Unclassified Autosomal Dominant Spinocerebellar Ataxia
- Undiagnosed Disorders
- Vitamin B12 Deficiency Ataxia
- WAGR Syndrome
- Williams Syndrome
- Wolf-Hirschhorn Syndrome
- 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
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Jun 30, 2010
- Primary completion
- Nov 30, 2100
- Completion
- Nov 30, 2100
- Last update posted
- May 28, 2025
2010 – 2100
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Sanford Health | Sioux Falls | South Dakota | 57104 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
Non-U.S. locations
This page focuses on the U.S. directory. The official record also lists 1 non-U.S. site.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT01793168, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted May 28, 2025 · Synced May 21, 2026
Related: full search, browse by condition, browse by drug or therapy, browse by sponsor, browse by U.S. city.
Open the official record
The complete protocol, eligibility criteria, and contact information for NCT01793168 live on ClinicalTrials.gov.