Recruiting

Observational Study

Sponsor:

Sanford Health

Code:

NCT01793168

Conditions

Rare Disorders

Undiagnosed Disorders

Disorders of Unknown Prevalence

Cornelia De Lange Syndrome

Prenatal Benign Hypophosphatasia

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

The Coordination of Rare Diseases at Sanford (CoRDS) is an international patient registry that serves as a centralized resource for rare disease research. Individuals affected by rare diseases, undiagnosed conditions, and disorders of unknown prevalence may voluntarily contribute health information to support natural history studies, participant recruitment, and other research efforts. Through partnerships with patient advocacy organizations and researchers worldwide, CoRDS helps connect rare disease communities with research opportunities while advancing knowledge across more than 7,000 rare diseases. Participation is free of charge.

Conditions

Rare Disorders

Undiagnosed Disorders

Disorders of Unknown Prevalence

Cornelia De Lange Syndrome

Prenatal Benign Hypophosphatasia

Study ID

NCT01793168

Start date

Jul, 2010

Status verified date

Oct, 2026

Completion date

Dec, 2100

Anticipated

Primary completion date

Dec, 2100

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

20000 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • 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 ]

Central Contacts and Locations

Central contacts

CoRDS Team

1-877-658-9192cords@sanfordhealth.org

Locations

Sanford Health

Recruiting

Sioux Falls, South Dakota, United States, 57104

Contacts

CoRDS Team

877-658-9192cords@sanfordhealth.org

Principal Investigator:

Chun Hung Chan, PhD

More Information

Sponsor

Sanford Health

Last update posted

Oct 28, 2026

Last verified

Oct, 2026

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
  • Cystinosis
  • Juvenile nephropathic cystinosis
  • Nephropathic infantile cystinosis
  • Ocular cystinosis
  • Kennedy disease
  • Spinal Bulbar Muscular Atrophy (SBMA)
  • SMC1A Truncated Mutations (causing loss of gene function)
  • Leigh syndrome
  • Warburg Micro Syndrome
  • Mucolipidosis
  • Mitochondrial aminoacyl-tRNA synthetases (Mt-aaRS Disorders)
  • Shine Syndrome
  • Hypertrophic Olivary Degeneration
  • Non-Ketotic Hyperglycinemia
  • Intestinal Bromhidrosis Syndrome
  • Fish odor syndrome
  • Autosomal recessive extra oral halitosis
  • CACNA1H mutation
  • Dimethylglycine dehydrogenase deficiency
  • Parry Romberg Syndrome
  • Nasu-Hakola disease

Trial information was received from ClinicalTrials.gov and was last updated on 2026-11-14. This information was provided to ClinicalTrials.gov by Sanford Health on 2026-10-28. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.