RECRUITING

CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)

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Conditions

Congenital Central Hypoventilation SyndromeNatural HistoryRare Disease

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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 capture longitudinal natural history data in Congenital Central Hypoventilation Syndrome (CCHS). This will include capturing standardized clinical data from standard of care assessments at several CCHS referral centers. Funding source-FDA OOPD

Official Title

CCHS SHARE: A Multi-center Longitudinal Natural History Study

Quick Facts

Study Start:2024-09-01
Study Completion:2028-08-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06554275

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. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Casey Rand, MSDS
CONTACT
312-227-3300
Crand@luriechildrens.org
Erin Lonergan, MS
CONTACT
312-227-3300
ersmith@luriechildrens.org

Principal Investigator

Debra E Weese-Mayer, MD
PRINCIPAL_INVESTIGATOR
Ann & Robert H Lurie Children's Hospital of Chicago
Maxime Patout, MD
PRINCIPAL_INVESTIGATOR
Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière
Martin Samuels, MD
PRINCIPAL_INVESTIGATOR
Great Ormond Street Hospital-London (GOSH)
Christophe Delclaux, MD
PRINCIPAL_INVESTIGATOR
Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital universitaire Robert Debré

Study Locations (Sites)

Ann & Robert H Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611
United States

Collaborators and Investigators

Sponsor: Ann & Robert H Lurie Children's Hospital of Chicago

  • Debra E Weese-Mayer, MD, PRINCIPAL_INVESTIGATOR, Ann & Robert H Lurie Children's Hospital of Chicago
  • Maxime Patout, MD, PRINCIPAL_INVESTIGATOR, Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière
  • Martin Samuels, MD, PRINCIPAL_INVESTIGATOR, Great Ormond Street Hospital-London (GOSH)
  • Christophe Delclaux, MD, PRINCIPAL_INVESTIGATOR, Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital universitaire Robert Debré

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 Date2024-09-01
Study Completion Date2028-08-31

Study Record Updates

Study Start Date2024-09-01
Study Completion Date2028-08-31

Terms related to this study

Keywords Provided by Researchers

  • Natural History
  • Rare Disease

Additional Relevant MeSH Terms

  • Congenital Central Hypoventilation Syndrome