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language:engAlthough strategies exist to prevent cancers in rare tumour risk syndromes (RTRS), most healthcare systems keep opting for the treatment of clinically expressed cancer. PREVENTABLE aims to assess the clinical, social and economic impact of applying preventive care pathways for families with RTRS. This study, within PREVENTABLE, aims to identify the barriers and facilitators influencing the choice of the care pathways for RTRS. A cross-cultural mixed-methods study will be conducted, consisting of: 1) two international online surveys, following the COM-B model, examining the barriers and facilitators to i. the referral of the best care pathways by clinical teams who specialize in RTRS (n=100) and ii. the uptake of the recommended care pathways by patients with RTRS (n=300); and 2) focus groups for an in-depth exploration of the barriers and facilitators with patients, their social network and clinical teams (36 individuals per stakeholder group). Eight RTRS will be included: Birt-Hogg-Dubé Syndrome (variant in FLCN), Familial Malignant Melanoma (variant in CDKN2A or CDK4), Gastrointestinal Stromal Tumours (variant in KIT or SDHA or SDHB or SDHC or SDHD), Hereditary Diffuse Gastric Cancer (variant in CDH1 or CTNNA1), Li-Fraumeni Syndrome (variant in TP53), Peutz-Jeghers Syndrome (variant in STK11), PTEN Hamartoma Tumour Syndrome (variant in PTEN) and Hereditary Leiomyomatosis and Renal Cell Carcinomas (variant in FH). The study will be conducted in six European countries – Portugal, Spain, France, Germany, Netherlands and Norway. Data from the surveys and focus groups will be triangulated to inform the development of person-centred communication guidelines for improving the referral and uptake of the care pathways for RTRS. This might ultimately contribute to enhance the referral (by clinical teams) and uptake (by patients) of RTRS preventive strategies and inform the best care for RTRS globally.

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