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 people with localized or metastatic renal cell carcinoma (RCC) in the Netherlands. This multicenter cohort is linked with the Netherlands Cancer Registry to gather detailed clinical information alongside standard data. The study also supports observational research and randomized interventional studies through a "Trial within cohorts" (TwiCs) design. Participants provide consent for online collection of PROMs and PREMs, which include assessments of health-related quality of life, satisfaction with care, and optionally, return-to-work questionnaires. These data are collected using the PROFILES registry and can be accessed by both patients and their treating physicians. Patients may also agree to take part in additional studies nested within the cohort using the TwiCs method. During the study, researchers will monitor survival, disease progression, and patient-reported outcomes over five years. Data collection includes clinical information, quality of life questionnaires, and patient care satisfaction surveys. This approach allows long-term observation and evaluation of how patients experience their illness and treatment over time.

Researchers are investigating autism spectrum disorder (ASD) in older adults, focusing on improving recognition, diagnosis, and access to psycho-education. Despite increasing awareness, autism in older adults remains underdiagnosed in mental health care, partly due to limited knowledge and scientific data for this age group. The study aims to evaluate whether training healthcare professionals enhances ASD detection and whether a tailored psycho-education program benefits older adults diagnosed or likely diagnosed with ASD by improving their mental health and quality of life. The study involves two main interventions: training mental health professionals in detecting and diagnosing ASD in older adults, delivered through two training sessions with ongoing online expert consultation; and an adapted psycho-education (PE) program for older adults with confirmed or probable ASD. The PE program consists of eight weekly group sessions, each lasting two hours, designed to increase understanding, acceptance, coping, and resilience related to ASD. Participants aged 55 and older, diagnosed or with probable ASD, will complete questionnaires assessing quality of life, acceptance of diagnosis, knowledge of ASD, recognition of traits, coping strategies, autistic traits, resilience, and psychological distress. These assessments occur at baseline, before PE, after PE, and at nine months follow-up. A proxy chosen by the participant will also provide reports at two points. The study also monitors the number of ASD diagnoses in participating centers over time, aiming to enhance diagnosis rates and provide valuable experiences from those attending the PE program.