Actively Recruiting
Questionnaire on Congenital Cancer Signs Through Self-Assessment (QUOCCAS)
Led by Insel Gruppe AG, University Hospital Bern · Updated on 2026-05-01
205
Participants Needed
1
Research Sites
52 weeks
Total Duration
On this page
Sponsors
I
Insel Gruppe AG, University Hospital Bern
Lead Sponsor
B
Berner Stiftung für krebskranke Kinder und Jugendliche
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are studying a questionnaire called QUOCCAS, completed by patients or caregivers, to see if it can accurately identify children and adolescents with cancer who might have an inherited cancer predisposition syndrome (CPS). The study also looks at whether giving families an educational brochure before their clinic visit improves their understanding of genetics and their satisfaction with care. The research compares QUOCCAS results to physician assessments and genetic testing. Participants are randomly assigned to receive either the educational Pre-Visit Preparation (PVP) brochure before completing the QUOCCAS questionnaire or to complete the questionnaire without the brochure. All participants provide a saliva or blood sample for genetic testing through whole-exome or whole-genome sequencing. The study also uses a clinician tool called MIPOGG to assess genetic risk, and results from all methods are compared. During the study, participants complete the QUOCCAS questionnaire and provide samples for genetic sequencing. They also fill out surveys about their knowledge of genetics and satisfaction with care. The main measure is how well QUOCCAS identifies CPS compared to genetic testing, with additional evaluations of caregiver knowledge and satisfaction. The study lasts up to 36 months and monitors the feasibility of using these tools in clinical care.
CONDITIONS
Brief Title
Questionnaire on Congenital Cancer Signs Through Self-Assessment
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Newly diagnosed patients with a cancer diagnosis included in the International Classification of Childhood Cancer version 3 (ICCC3) criteria
- Treated at participating hospitals
- 21 years of age or younger
You will not qualify if you...
- Over 21 years of age
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 36 months
Participants complete the QUOCCAS questionnaire and provide a saliva or blood sample for germline genetic sequencing to identify signs suggestive of cancer predisposition syndromes. Some participants receive a Pre-Visit Preparation brochure before completing the questionnaire to improve knowledge and engagement. Additionally, medical records are reviewed using the MIPOGG digital decision-support tool.
1 to 2 visits depending on group assignment
Duration - Up to 36 months
Participants complete follow-up surveys to assess genetic literacy, satisfaction with care, and feasibility of the questionnaire and brochure implementation over time.
Periodic follow-up contacts
Trial Site Locations
Total: 1 location
1
Inselspital, Universitäts Kinderklinik (University Children's Hospital) Bern
Bern, Switzerland, 3010
Actively Recruiting
Research Team
N
Nicolas Waespe, MD PhD, PD
J
Jakica Cavar, MSc
How is the study designed?
Study Type
INTERVENTIONAL
Masking
DOUBLE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
DIAGNOSTIC
Number of Arms
2
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