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

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

Conditions

Congenital Central Hypoventilation Syndrome

Study Overview

Study Details

Study overview

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

CCHS SHARE: A Multi-center Longitudinal Natural History Study

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

Condition
Congenital Central Hypoventilation Syndrome
Intervention / Treatment

-

Contacts and Locations

Chicago

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

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.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

    Ages Eligible for Study

    to

    Sexes Eligible for Study

    ALL

    Accepts Healthy Volunteers

    No

    Collaborators and Investigators

    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

    2028-08-31