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:

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.

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

May, 2025

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

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

Principal Investigator:

Benjamin Forred, MBA

More Information

Sponsor

Sanford Health

Last update posted

May 29, 2025

Last verified

May, 2025

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

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Sanford Health on 2025-05-29.