About this trial
This clinical trial tests whether a patient- and caregiver-completed questionnaire (QUOCCAS) can accurately help identify children and adolescents with cancer who may have an underlying cancer predisposition syndrome (CPS). The study will also evaluate whether providing families with an educational brochure before their clinic visit improves their understanding of genetics and their satisfaction with care.
The main questions it aims to answer are:
* Does QUOCCAS identify children at risk for CPS as accurately as physician-based tools and compared to genetic testing? * Does the Pre-Visit Preparation (PVP) brochure improve caregiver knowledge about genetics? * Does the PVP brochure improve caregiver satisfaction with the care and information they receive?
Participants will:
* Complete the QUOCCAS questionnaire about family history, clinical features, and cancer signs * Provide a blood or saliva sample for genetic testing (whole-exome or whole-genome sequencing) * Randomly receive or not receive the educational Pre-Visit Preparation brochure before completing the questionnaire * Complete brief surveys on their knowledge and satisfaction
Eligibility criteria
Qualifiers
The investigators will include newly diagnosed patients who received a cancer diagnosis included in the International Classification of Childhood Cancer version 3 (ICCC3) criteria, treated at participating hospitals
Disqualifiers
Over 21 years of age
Trial design
Treatments tested in this trial
- Pre-Visit Preparation (PVP) Brochure
- QUOCCAS Questionnaire
- Germline genetic sequencing for Cancer Predisposition Syndromes (CPS)
- MIPOGG Assessment
Treatment groups
Sponsors and collaborators
Insel Gruppe AG, University Hospital Bern
Lead sponsor
Berner Stiftung für krebskranke Kinder und Jugendliche
Collaborator
Fondation CANSEARCH
Collaborator
Childhood Cancer Switzerland
Collaborator
Zoé4Life
Collaborator
Swiss Cancer League
Collaborator