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The PRO-RCC study: a long-term PROspective Renal Cell Carcinoma cohort in the Netherlands, providing an
Hilin Yildirim1,2, Christiaan V Widdershoven3, Maureen Jb Aarts4
1Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands. h.yildirim@amsterdamumc.nl.
Background:
Ongoing research in the field of both localized, locally advanced and metastatic renal cell carcinoma has resulted in the availability of multiple treatment options. Hence, many questions are still unanswered and await further research. A nationwide collaborative registry allows to collect corresponding data. For this purpose, the Dutch PROspective Renal Cell Carcinoma cohort (PRO-RCC) has been founded, for the prospective collection of long-term clinical data, patient reported outcome measures (PROMs) and patient reported experience measures (PREMs).
Methods:
PRO-RCC is designed as a multicenter cohort for all Dutch patients with renal cell carcinoma (RCC). Recruitment will start in the Netherlands in 2023. Importantly, participants may also consent to participation in a 'Trial within cohorts' studies (TwiCs). The TwiCs design provides a method to perform (randomized) interventional studies within the registry. The clinical data collection is embedded in the Netherlands Cancer Registry (NCR). Next to the standardly available data on RCC, additional clinical data will be collected. PROMS entail Health-Related Quality of Life (HRQoL), symptom monitoring with optional ecological momentary assessment (EMA) of pain and fatigue, and optional return to work- and/or nutrition questionnaires. PREMS entail satisfaction with care. Both PROMS and PREMS are collected through the PROFILES registry and are accessible for the patient and the treating physician.
Trial Registration:
Ethical board approval has been obtained (2021_218) and the study has been registered at ClinicalTrials.gov (NCT05326620).
Discussion:
PRO-RCC is a nationwide long-term cohort for the collection of real-world clinical data, PROMS and PREMS. By facilitating an infrastructure for the collection of prospective data on RCC, PRO-RCC will contribute to observational research in a real-world study population and prove effectiveness in daily clinical practice. The infrastructure of this cohort also enables that interventional studies can be conducted with the TwiCs design, without the disadvantages of classic RCTs such as slow patient accrual and risk of dropping out after randomization.
Insights
The Dutch PROspective Renal Cell Carcinoma cohort (PRO-RCC) is a new registry collecting long-term clinical data, patient-reported outcomes, and experiences for renal cell carcinoma (RCC) patients. This initiative supports real-world research and facilitates clinical trials.
Area of Science:
- Oncology
- Clinical Research
- Epidemiology
Background:
- Renal cell carcinoma (RCC) research has yielded multiple treatments, yet many questions remain unanswered.
- A nationwide collaborative registry is essential for collecting comprehensive data on RCC.
- The Dutch PROspective Renal Cell Carcinoma cohort (PRO-RCC) was established for prospective, long-term data collection.
Purpose of the Study:
- To establish a nationwide, long-term cohort for collecting real-world clinical data, patient-reported outcome measures (PROMs), and patient-reported experience measures (PREMs) for renal cell carcinoma (RCC).
- To facilitate observational research in a real-world RCC study population and assess treatment effectiveness in daily clinical practice.
- To provide an infrastructure for conducting interventional studies using the 'Trial within cohorts' (TwiCs) design, overcoming limitations of traditional randomized controlled trials.
Main Methods:
- PRO-RCC is a multicenter cohort study enrolling all Dutch patients with renal cell carcinoma (RCC), with recruitment beginning in 2023.
- Clinical data collection is integrated with the Netherlands Cancer Registry (NCR), with additional data points gathered.
- Patient-reported outcomes (PROMs) include health-related quality of life, symptom monitoring (pain, fatigue), and questionnaires on work and nutrition. Patient-reported experiences (PREMs) assess satisfaction with care. Data collection utilizes the PROFILES registry.
Main Results:
- Ethical board approval obtained (2021_218).
- Study registered at ClinicalTrials.gov (NCT05326620).
- The PRO-RCC registry is operational for prospective data collection.
Conclusions:
- PRO-RCC is a nationwide, long-term cohort designed for collecting real-world clinical data, PROMs, and PREMs in renal cell carcinoma (RCC) patients.
- The cohort provides a robust infrastructure for observational research and evaluating treatment effectiveness in routine clinical settings.
- The PRO-RCC infrastructure supports interventional studies via the TwiCs design, offering advantages over traditional randomized controlled trials regarding patient accrual and retention.
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