RECRUITING

North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)

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Conditions

Mitochondrial DisordersMitochondrial Genetic DisordersMitochondrial DiseasesDisorder of Mitochondrial Respiratory Chain ComplexesDeletion and Duplication of Mitochondrial DNAMito DiseaseMitochondriaMitochondrial diseaseMitochondrial myopathy, encephalopathy, lactic acidosis, and stroke (MELAS) SyndromeMyoclonic Epilepsy with Ragged Red Fibers (MERRF)Leber Hereditary Optic Neuropathy (LHON)Leigh SyndromeNeuropathy, ataxia, and retinitis pigmentosa (NARP)Kearns Sayre syndromeAlpers HuttenlocherPearsonMitochondrial Neurogastrointestinal Encephalopathy (MNGIE)Barth SyndromeCoenzyme Q (CoQ) DeficiencyChronic progressive external ophthalmoplegia (CPEO)DADDiabetes and DeafnessEncephalopathyEncephalomyopathyFamilial Bilateral Striatal Necrosis (FBSN)Hepatocerebral DiseaseLeukoencephalopathyMaternally Inherited Leigh Syndrome (MILS)Complex I DeficiencyComplex II DeficiencyComplex III DeficiencyComplex IV DeficiencyComplex V Deficiencymitochondrial DNA depletion syndromemtDNA depletion syndrome

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.

Official Title

North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)

Quick Facts

Study Start:2010-12
Study Completion:2025-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT01694940

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Patients diagnosed with or suspected to have a mitochondrial disorder
  2. * Adult carriers of known mitochondrial DNA mutations
  3. * Patients with laboratory analysis indicative of a mitochondrial disorder.
  4. * Medical information and tissue samples are also accepted from deceased individuals who fulfill the above criteria.
  1. * Patients not suspected of having a mitochondrial disorder
  2. * Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.

Contacts and Locations

Study Contact

Michio Hirano, MD
CONTACT
12123051048
NAMDC@columbia.edu
Kristin Engelstad, MS
CONTACT
12123056834
NAMDC@columbia.edu

Principal Investigator

Michio Hirano, MD
STUDY_DIRECTOR
Columbia University

Study Locations (Sites)

University of California San Diego
San Diego, California, 92103
United States
Lucile Packard Children's Hospital
Stanford, California, 94305
United States
Children's Hospital of Colorado
Aurora, Colorado, 80045
United States
Children's National Medical Center
Washington, District of Columbia, 20010
United States
University of Florida
Gainesville, Florida, 32610
United States
Massachusetts General Hospital
Boston, Massachusetts, 02115
United States
Mayo Clinic
Rochester, Minnesota, 55902
United States
Columbia University Medical Center
New York, New York, 10032
United States
Virtual Site (Remote enrollment)
New York, New York, 10032
United States
Akron Children's Hospital
Akron, Ohio, 44308
United States
Case Western Reserve University
Cleveland, Ohio, 44106
United States
Cleveland Clinic
Cleveland, Ohio, 44195
United States
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
United States
Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, 15224
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
Seattle Children's Hospital and Regional Medical Center
Seattle, Washington, 98105
United States

Collaborators and Investigators

Sponsor: Columbia University

  • Michio Hirano, MD, STUDY_DIRECTOR, Columbia University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2010-12
Study Completion Date2025-12

Study Record Updates

Study Start Date2010-12
Study Completion Date2025-12

Terms related to this study

Keywords Provided by Researchers

  • mitochondrial disorders
  • Mito Disease
  • Mitochondria
  • Mitochondrial disease
  • Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke (MELAS) Syndrome
  • Myoclonic Epilepsy with Ragged Red Fibers (MERRF)
  • Leber Hereditary Optic Neuropathy (LHON)
  • Leigh Syndrome
  • Neuropathy, ataxia, and retinitis pigmentosa (NARP)
  • Kearns Sayre syndrome
  • Alpers Huttenlocher
  • Pearson
  • Mitochondrial Neurogastrointestinal Encephalopathy (MNGIE)
  • Barth Syndrome
  • Coenzyme Q (CoQ) Deficiency
  • Chronic progressive external ophthalmoplegia (CPEO)
  • DAD
  • Diabetes and Deafness
  • Encephalopathy
  • Encephalomyopathy
  • Familial Bilateral Striatal Necrosis (FBSN)
  • Hepatocerebral Disease
  • Leukoencephalopathy
  • Maternally Inherited Leigh Syndrome (MILS)
  • Complex I Deficiency
  • Complex II Deficiency
  • Complex III Deficiency
  • Complex IV Deficiency
  • Complex V Deficiency
  • mitochondrial DNA depletion syndrome
  • mtDNA depletion syndrome

Additional Relevant MeSH Terms

  • Mitochondrial Disorders
  • Mitochondrial Genetic Disorders
  • Mitochondrial Diseases
  • Disorder of Mitochondrial Respiratory Chain Complexes
  • Deletion and Duplication of Mitochondrial DNA