Social Participation After Childhood Craniopharyngioma

Craniopharyngioma is a rare, benign central nervous system tumor, which may be a source of multiple complications, from endocrinology to vision, neurology and neurocognitive functions. This morbidity can lead to reduced participation in life activities, as described in the International Classification of Functioning, Disability, and Health (ICF). The primary objective of this study is to measure participation in life activities in a population of children affected by childhood craniopharyngioma, using the assessement of life habits questionnaire (LIFE-H questionnaire), validated as a social participation measurement tool in various pediatric disabilities.

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Key information

Conditions

Children With a Craniopharyngioma Craniopharyngioma Neoplasms Neoplasms by Histologic Type Neoplasms, Germ Cell and Embryonal Neoplasms, Nerve Tissue Neuroectodermal Tumors

Age range

1 day–18 year

Sex eligibility

All sexes

Study type

Observational

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Children with a craniopharyngioma

Exclusion criteria

None

Treatment and study plan

observational study so no intervention

Other

observational study, so no intervention

Primary outcomes

LIFE-H questionnaire (Assessment of Life Habits)

Time frame: At maximum 6 months after inclusion

The LIFE-H questionnaire is sent by mail to parents' patient. For parents who do not return the questionnaire completed, a telephone call is made and the LIFE-H questionnaire is completed by phone.

Sponsors and collaborators

Lead sponsor

BERTHILLIER Julien

Other

Registry information

Acronym: CRANIO

Important dates

Study start: 2014
Primary completion: 2014
Study completion: 2014
First posted: May 4, 2017
Registry last updated: May 8, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed