RECRUITING

Longitudinal Study of Neurodegenerative Disorders

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Conditions

MLDKrabbe DiseaseALDMPS IMPS IIMPS IIIVanishing White Matter DiseaseGM3 GangliosidosisPKANTay-Sachs DiseaseNP DeficiencyOsteopetrosisAlpha-MannosidosisSandhoff DiseaseNiemann-Pick DiseasesMPS IVGaucher DiseaseGANGM1 GangliosidosesMorquio DiseaseS-Adenosylhomocysteine Hydrolase DeficiencyBatten DiseasePelizaeus-Merzbacher DiseaseLeukodystrophyLysosomal Storage DiseasesPurine Nucleoside Phosphorylase DeficiencyMultiple Sulfatase Deficiency DiseasePediatricRareNeurodegenerativeGeneticNeurodevelopmentBrainMRIBiorepositoryNDRDLongitudinalCognitiveMotorLanguageAdaptive behavior

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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 purpose of this study is to understand the course of rare genetic disorders that affect the brain. This data is being analyzed to gain a better understanding of the progression of the rare neurodegenerative disorders and the effects of interventions.

Official Title

Longitudinal Study of Neurodegenerative Disorders

Quick Facts

Study Start:2012-01-11
Study Completion:2035-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03333200

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:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Any patient with a genetic neurodegenerative disorder
  1. * none

Contacts and Locations

Study Contact

Deepa Rajan, MD
CONTACT
412-692-8388
rajands@upmc.edu

Study Locations (Sites)

UPMC Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, 15224
United States

Collaborators and Investigators

Sponsor: University of Pittsburgh

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 Date2012-01-11
Study Completion Date2035-01

Study Record Updates

Study Start Date2012-01-11
Study Completion Date2035-01

Terms related to this study

Keywords Provided by Researchers

  • Pediatric
  • Rare
  • Neurodegenerative
  • Genetic
  • Neurodevelopment
  • Brain
  • MRI
  • Biorepository
  • NDRD
  • Longitudinal
  • Cognitive
  • Motor
  • Language
  • Adaptive behavior

Additional Relevant MeSH Terms

  • MLD
  • Krabbe Disease
  • ALD
  • MPS I
  • MPS II
  • MPS III
  • Vanishing White Matter Disease
  • GM3 Gangliosidosis
  • PKAN
  • Tay-Sachs Disease
  • NP Deficiency
  • Osteopetrosis
  • Alpha-Mannosidosis
  • Sandhoff Disease
  • Niemann-Pick Diseases
  • MPS IV
  • Gaucher Disease
  • GAN
  • GM1 Gangliosidoses
  • Morquio Disease
  • S-Adenosylhomocysteine Hydrolase Deficiency
  • Batten Disease
  • Pelizaeus-Merzbacher Disease
  • Leukodystrophy
  • Lysosomal Storage Diseases
  • Purine Nucleoside Phosphorylase Deficiency
  • Multiple Sulfatase Deficiency Disease