An interventional study of YESS! game and Snake '97 in Congenital Adrenal Hyperplasia, Hypogonadotropic Hypogonadism and Growth Hormone Deficiency, sponsored by dr. Laura C. G. de Graaff-Herder. Not yet recruiting at 7 sites in 4 countries. Open to participants aged 15 Years to 20 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2023-09-07.
Sponsored by dr. Laura C. G. de Graaff-Herder · Not applicable, Interventional, and Supportive care
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Among 14 studies in Adrenal Hyperplasia, Congenital with a site in United Kingdom — 5 open to participants now, 7 under way, 4 of them phase 3. Adrenal Hyperplasia, Congenital · United Kingdom.
Among the 14 studies in Adrenal Hyperplasia, Congenital with a site in United Kingdom, this one is the 3rd largest by planned enrollment of the 10 interventional ones that give a count, is the only one that started in 2024, is the only one with no phase, and was the 4th registered.
101 studies on the registry are indexed under Adrenal Hyperplasia, Congenital; 28 are open to participants now.
Browse Adrenal Hyperplasia, Congenital studies →5 of the 14 studies in Adrenal Hyperplasia, Congenital with a site in United Kingdom are open now. Recruiting first, the newest first:
Crinetics Pharmaceuticals Inc. · Sites in United Kingdom, United States, Argentina and 10 more countries
Ages 1–17
Crinetics Pharmaceuticals Inc. · Sites in United Kingdom, United States, Argentina and 12 more countries
Ages 18–74
Crinetics Pharmaceuticals Inc. · Sites in United Kingdom, United States, Argentina and 3 more countries
Ages 16–74
H. Lundbeck A/S · Sites in United Kingdom, United States, Denmark and 6 more countries
Ages 18–70
A study can be open while its sites in United Kingdom have not opened yet or have stopped. Only those recruiting at a site in United Kingdom →
Of the 20 Adrenal Hyperplasia, Congenital studies recruiting now, 10 (50%) set no upper age limit and 9 (45%) stop at 75 or younger; 7 take children under 18; none take healthy volunteers.
This study: 15 Years to 20 Years · all sexes · healthy volunteers too.
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14 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 1 · Phase 2 6 · Phase 3 4
First in 2004; this study’s year is marked. 1 started in 2024.
This study's planned enrollment of 160 is above the median of 37 across 50 interventional studies indexed under Adrenal Hyperplasia, Congenital.
Median enrollment 127 across the 10 interventional studies, 295 across the 4 observational. Of the 6 that completed or were terminated, 3 (50%) have results posted.
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10 of 14 have an industry lead sponsor. The 9 most frequent:
dr. Laura C. G. de Graaff-Herder is the lead sponsor of 3 studies on the registry; 3 are open to participants now.
dr. Laura C. G. de Graaff-Herder has 2 studies filed under Adrenal Hyperplasia, Congenital — fewer than ten, so there is no comparison to draw.
2 of the studies in Adrenal Hyperplasia, Congenital with a site in United Kingdom that are under way reach primary completion within a year, 1 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT07144163Phase 3Crinetics Pharmaceuticals Inc.A Study to Evaluate Atumelnant in Adults With Congenital Adrenal Hyperplasia | 2027-05 |
| NCT04252001dr. Laura C. G. de Graaff-HerderGrowing up With the Young Endocrine Support System (YESS!) | 2026-12-01 |
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Among the 14 studies in Adrenal Hyperplasia, Congenital with a site in United Kingdom, from their registry updates:
Nothing recorded among them since 2026-09-25.
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Transition from paediatric to adult endocrinology is a challenge for adolescents, families and doctors. Up to 25% of young adults with chronic endocrine disorders are lost to follow-up ('drop-out') once the young adult moves out of paediatric care. Non-attendance and sub-optimal medical self-management can lead to serious and expensive medical complications. In a pilot study, adolescents suggested the use of e-technology to become more involved in the transition process. The investigators have designed and developed the YESS! game, a tool to help improve medical self-management in adolescents with chronic endocrine disorders. The hypothesis is that adolescents playing the YESS! game will show a larger increase in self-management score during the first year of transition and will have a lower drop-out rate at the adult endocrine outpatient clinic (OPC), compared to adolescents who do not play the game.
Rationale: Transition from paediatric to adult endocrinology is a challenge for adolescents, families and doctors. Up to 25% of young adults with chronic endocrine disorders are lost to follow-up ('drop-out') once the young adult moves out of paediatric care. Non-attendance and sub-optimal medical self-management can lead to serious and expensive medical complications. In a pilot study, adolescents suggested the use of e-technology to become more involved in the transition process. The investigators have designed and developed the YESS! game, a tool to help improve medical self-management in adolescents with chronic endocrine disorders. The hypothesis is that adolescents playing the YESS! game will show a larger increase in self-management score during the first year of transition and will have a lower drop-out rate at the adult endocrine outpatient clinic (OPC), compared to adolescents who do not play the game.
Objective: 1.To improve medical self-management. 2.To prevent drop-out from the adult outpatient clinic. Study design: multicentre randomized controlled trial Study population: 160 transition patients from 15 to 20 years old from the participating countries Spain, The United Kingdom, Belgium and the Netherlands. Patients are diagnosed with a chronic endocrine disorder. Intervention: The study consists of 4 study arms: receiving the YESS! game and toolkit (group YT), receiving the control game and toolkit (group GT), receiving the toolkit only (group T) and receiving regular transition care (group O). Every group will receive regular transition care. The transition toolkit consists of paper cards with assignments, ideas and tips regarding medical self-management. Main study parameters: Primary outcome: the Self-management and Transition to Adulthood with Rx (=treatment) (STARx) questionnaire score 12 months after inclusion in group YT compared to group O. Secondary outcome: the STARx questionnaire score 6 months after inclusion in group YT compared to the other study groups, the STARx questionnaire score 12 months after inclusion in group YT compared to group GT and T and the drop-out rate to the adult outpatient clinic in the first year after the last visit to the paediatric endocrinologist (i.e. one year after the moment of transfer) in group YT compared to groups GT, T and O.
Nature and extent of the burden and risks associated with participation: The participants are not exposed to any risks. The YESS! and the control game are safe apps played on a mobile phone or tablet. The burden consists of filling out the STARx questionnaires and playing the YESS! or control game. The questionnaires will be filled out online at home at the start of the study and after 6 and 12 months. Every 6 months the subject has an appointment at the outpatient clinic. The participant can play the YESS! game for a maximum of 15 minutes a day to prevent game addiction. The control game could be played for an unlimited amount of time, but will unlikely cause game addiction since the game is not considered challenging and exciting enough.
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Exclusion Criteria:
Group receives YESS! game and transition-toolkit
Device: YESS! game · Other: Transition-toolkit
Group receives control game and transition-toolkit
Device: Snake '97 · Other: Transition-toolkit
Group receives transition-toolkit
Other: Transition-toolkit
Group receives usual transition care
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.
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.
Also known as: control game
The transition toolkit consists of paper cards with assignments, ideas and tips regarding medical self-management.
Medical self-management group YT compared to group O @12months
The difference in Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score from baseline after 12 months in participants receiving the YESS! game and toolkit (group YT) compared to participants receiving regular care (group O).
Time frame: 12 months
Medical self-management group YT compared to group GT and -T @12months
The difference in Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score from baseline after 12 months in participants receiving the YESS! game and toolkit (group YT) compared to participants receiving the control game and toolkit (group GT) and participants receiving the toolkit only (group T). Transition to Adulthood with Rx (treatment) (STARx) questionnaire score in group YT compared to group GT and group T after 12 months.
Time frame: 12 months
Medical self-management in group YT compared to group GT, -T and -O @6months
The difference in Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score from baseline after 6 months in participants receiving the YESS! game and toolkit (group YT) compared to participants receiving the control game and toolkit (group GT), participants receiving the toolkit only (group T) and participants receiving regular care (group O).
Time frame: 6 months
Drop-out rate adult outpatient clinic
The difference in the drop-out rate to the outpatient clinic in group YT compared to group GT, group T and group O during the first year after the last visit to the paediatric endocrinologist (i.e. one year after the moment of transfer, t=24 m).
Time frame: 12 months
Plan to share: Yes — The IPD has not been finalized yet. The investigators intent to share the full anonymized dataset, study protocol and statistical analysis plan upon request after publication of the results. Informed consent forms will not be shared."
No publications or documents are linked to this record.
Start is estimated for Dec 2024; primary completion for Dec 2026, 24 months later.
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This study is not yet recruiting, as verified in Sep 2023. You cannot join it, but the record below documents what was studied.
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Adrenal Hyperplasia, Congenital →
dr. Laura C. G. de Graaff-Herder