Venray

Researchers are conducting a nationwide long-term study called PRO-RCC to collect real-world clinical data, patient-reported outcome measures PROMs, and patient-reported experience measures PREMs for patients with renal cell carcinoma RCC, including both localized and metastatic forms. This study also provides a framework to conduct additional observational and randomized interventional studies within the cohort using a Trial within Cohorts TwiCs design. The study gathers clinical data embedded in the Netherlands Cancer Registry and collects PROMs related to health-related quality of life and optional return-to-work questionnaires, as well as PREMs regarding satisfaction with care. These data are collected online through the PROFILES registry and are accessible to both patients and their treating physicians. Participants may also agree to take part in randomized studies within the cohort. Participants will be monitored for up to five years, with primary outcomes including survival, disease progression, and patient-reported outcomes collected over this period. Secondary outcomes include patient-reported adverse events over two years. The study involves regular collection of questionnaires and clinical data, supporting both observational research and interventional trials within the established cohort.

Researchers are studying autism spectrum disorder ASD in older adults, focusing on improving recognition and diagnosis in mental health care. This research addresses the underdiagnosis and unfamiliarity of autism in older people and investigates whether training health care professionals and providing psycho-education programs can improve diagnosis rates and mental health outcomes. The study also aims to evaluate the effects of psycho-education on knowledge, acceptance, coping, resilience, psychological distress, and quality of life in older adults with ASD. The study involves two main interventions training mental health professionals in detecting and diagnosing ASD in older adults, and offering an adapted psycho-education PE program consisting of eight weekly group sessions lasting two hours each for older adults diagnosed or likely diagnosed with ASD. The training includes sessions for entire teams and diagnosticians, plus ongoing online expert consultations. The interventions are rolled out sequentially across multiple mental health organizations in a stepped wedge trial design. Participants aged 55 and older with confirmed or probable ASD will complete assessments at four time points over 9 to 15 months, including quality of life, acceptance of diagnosis, knowledge and recognition of ASD traits, coping skills, autistic traits, resilience, and psychological distress. A proxy chosen by the participant will also provide related information at two time points. The study collects data on diagnosis rates before, during, and after the intervention. Participation involves completing questionnaires and attending the PE sessions if assigned, with minimal burden expected.