RECRUITING

Neurogenetics Patient Registry

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 objective of this project is to develop a Neurogenetics patient database and bio repository - which includes clinical information regarding history, physical examination, laboratory testing including genetic testing (NextGen sequencing including whole exome and whole genome sequencing, SNParray, etc.), neuroradiology studies, neurophysiology studies - all ordered as clinically deemed appropriate, natural history from clinical longitudinal follow-up and to use de-identified information from this registry/ repository, when appropriate for clinical and translational research.

Official Title

Neurogenetics Program Patient Registry: Clinical and Genetic Diagnosis, Natural History Study, Translational Research and Biorepository

Quick Facts

Study Start:2017-01-30
Study Completion:2028-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02995538

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. * Patients evaluated at the Neurogenetics clinic and suspected to have an underlying neurogenetic disorder will be included.
  2. * Patients with known abnormal genetic testing with a neurological phenotype will be included.
  1. * Patient with acquired diagnosis, which can explain the patients clinical symptoms and with a clinical phenotype or family history not suggestive of an underlying genetic etiology.

Contacts and Locations

Study Contact

Jennifer Baker, MA
CONTACT
412-69-26378
jennifer.baker@chp.edu

Principal Investigator

Deepa Soundara Rajan, MD
PRINCIPAL_INVESTIGATOR
University of Pittsburgh

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: University of Pittsburgh

  • Deepa Soundara Rajan, MD, PRINCIPAL_INVESTIGATOR, 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 Date2017-01-30
Study Completion Date2028-01

Study Record Updates

Study Start Date2017-01-30
Study Completion Date2028-01

Terms related to this study

Additional Relevant MeSH Terms

  • Neurogenetic Disorders