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Search / Trial NCT01793168

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

Launched by SANFORD HEALTH · Feb 13, 2013

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Trial Information

Current as of June 26, 2025

Recruiting

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) Smc1 A Truncated Mutations (Causing Loss Of Gene Function) Leigh Syndrome Warburg Micro Syndrome Mucolipidosis Mitochondrial Aminoacyl T Rna Synthetases (Mt Aa Rs Disorders) Shine Syndrome Hypertrophic Olivary Degeneration Non Ketotic Hyperglycinemia Intestinal Bromhidrosis Syndrome Fish Odor Syndrome Autosomal Recessive Extra Oral Halitosis Cacna1 H Mutation Dimethylglycine Dehydrogenase Deficiency

ClinConnect Summary

The Coordination of Rare Diseases at Sanford (CoRDS) is a clinical trial aimed at creating a large, centralized registry for individuals affected by rare diseases. This registry helps connect patients with researchers to improve understanding, treatments, and potential cures for these conditions. If you or a loved one have been diagnosed with a rare disease, or if you are a carrier of one, you may be eligible to participate in this study. Enrollment is free, and it provides a valuable opportunity to contribute to important research that could help many others.

Participants in this study can expect to provide information about their health and experiences related to their rare disease. This information will be used by researchers worldwide to advance treatments and better understand these conditions. The study is open to individuals of all ages and genders, as long as they have a diagnosis of a rare disease or are carriers of such diseases. You can learn more and enroll by visiting sanfordresearch.org/CoRDS. Your participation could make a significant difference in the fight against rare diseases.

Gender

ALL

Eligibility 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

About Sanford Health

Sanford Health is a leading integrated health system based in the United States, dedicated to advancing healthcare through innovative research and clinical trials. With a mission to improve patient outcomes and enhance the quality of care, Sanford Health leverages its extensive network of hospitals, clinics, and research facilities to conduct cutting-edge clinical studies across various therapeutic areas. Committed to fostering collaboration among researchers, healthcare professionals, and patients, Sanford Health aims to translate research findings into practical applications that benefit diverse communities and contribute to the advancement of medical science.

Locations

Sioux Falls, South Dakota, United States

Sydney, , Australia

Patients applied

MU

1 patients applied

Timeline

First submit

Trial launched

Trial updated

Estimated completion

Not reported

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