RENALOO

Renaloo is a leading French kidney patient organization committed to improving patients’ lives and shaping patient-centered care, research, innovation and health policy; Renaloo is nationally accredited, with nearly 25 years of experience in generating, structuring and analyzing patient-derived knowledge, Working with academic and clinical teams, Renaloo has conducted or co-constructed quantitative and qualitative studies, thematic research, structured collection of patient experiences, scientific publications in peer-reviewed journals , and contributions to research projects, including at European level. Its role can extend across the research cycle – from defining relevant questions and outcomes to feasibility, participant engagement, interpretation, implementation, dissemination and translation into practice and policy.

1. Co-construction & Ethic

Turn a technology- or disease-centred project into a patient- and pathway-centred project: real CKD pathways before dialysis, during dialysis, after transplantation; rupture points; unmet needs; delays, misunderstandings and loss of opportunity; success criteria beyond biomedical endpoints; ethical issues; trust.

2. Patients relevants outcomes

Define and assess outcomes that matter to patients: PROMs, PREMs, quality of life, fatigue, symptoms and adverse effects, acceptability of treatments and innovations, understanding of treatment, autonomy/empowerment, and impacts on family, social and professional life.

3. Implementation

Test information or decision-support tools, contribute to pathway experiments, adjust patient education approaches, identify barriers and facilitators to adoption, and assess usability and acceptability in real-world settings.

4. Dissemination

Translate results into understandable messages, webinars, brochures, decision aids and patient-facing content; relay results to patient communities, professionals and relevant European or scientific networks

5. Knowledge translation & policy impact

Interpret results from the patient perspective, formulate actionable recommendations, support uptake by healthcare actors and public authorities, and help turn research results into changes in practice, organisation and policy.