Growing up With the Young Endocrine Support System (YESS!)

NANot yet recruitingINTERVENTIONAL
Enrollment

160

Participants

Timeline

Start Date

December 1, 2024

Primary Completion Date

December 1, 2026

Study Completion Date

December 1, 2026

Conditions
Congenital Adrenal HyperplasiaHypogonadotropic HypogonadismGrowth Hormone DeficiencyCombined Pituitary Hormone DeficiencyTurner SyndromeKlinefelter SyndromeAddison's DiseaseAndrogen Insensitivity SyndromeThyroid Dysgenesis
Interventions
DEVICE

YESS! game

"The YESS! game is a real-life game for smartphone or tablet in which the player has to solve a mystery. The adolescent plays an active role in the course of the story. This results in an interactive experience. During the game, the adolescent is challenged with regard to self-management and responsible behaviour in general life, with parallels to medical selfmanagement and responsible behaviour.~The adolescent has to decide at several different moments whether to take action or not, whether to accept help or not and whether to share (fictive) confidential information or not. Other aspects that are covered are 'taking responsibility' and 'being on time'. The choices the adolescent makes throughout the game are registered in a coded manner, for later analysis. The game is available in Dutch, English and Spanish."

DEVICE

Snake '97

Snake '97 is a game for smartphone or tablet which is free and can be downloaded in the App Store. The game is a remake of the original snake on the mobile phone in 1997 in which the player moves the snake around and makes the snake 'consume food' (little dots) which causes the snake to grow longer. The goal is to make the snake as large as possible. The game has 12 difficulty levels.

OTHER

Transition-toolkit

The transition toolkit consists of paper cards with assignments, ideas and tips regarding medical self-management.

Trial Locations (7)

9000

Ghent University Hospital, Ghent

28009

Hospital Infantil Universitario Niño Jesús, Madrid

3015 GD

Erasmus Medical Center, Rotterdam

G51 4TF

Queen Elizabeth University Hospital, Glasgow

Royal Hospital for Children, Glasgow

E1 1BB

The Royal London Hospital (Barts Health NHS Trust), London

NW1 2PG

University College London Hospital (UCL Institute of Child Health), London

All Listed Sponsors
lead

dr. Laura C. G. de Graaff-Herder

OTHER

NCT04252001 - Growing up With the Young Endocrine Support System (YESS!) | Biotech Hunter | Biotech Hunter