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Carver RB, Budin-Ljøsne I. What influences people’s decision to participate in clinical trials? A qualitative interview study with patients and parents of patients diagnosed with primary membranoproliferative glomerulonephritis (MPGN). Rare 2024, 2:100048. link: https://www.sciencedirect.com/science/article/pii/S2950008724000310?via%3Dihub
The DECODE project has developed a guideline for informed consent in clinical trials for MPGN. The guideline is relevant for researchers, patient representatives and other stakeholders involved in the planning and conduct of clinical trials for MPGN. It provides comprehensive and tailored guidance regarding which information to provide to potential participants in multi-site clinical trials for MPGN under the informed consent process as well as links to relevant toolboxes. The guideline was developed to align with the ethical and legal requirements outlined in the EU Clinical Trial Regulation and the General Data Protection Regulation. link: http://www.era-decode.eu/downloads/DECODE_guideline_for_informed_consent_final.pdf
Piras R, Breno M, Valoti E, Alberti M, Iatropoulos P, Mele C, Bresin E, Donadelli R, Cuccarolo P, Smith RJH, Benigni A, Remuzzi G, Noris M. CFH and CFHR Copy Number Variations in C3 Glomerulopathy and Immune Complex-Mediated Membranoproliferative Glomerulonephritis. Front Genet. 2021 Jun 11;12:670727. eCollection 2021.
Noris M, Daina E, Remuzzi G. Membranoproliferative glomerulonephritis: no longer the same disease and may need very different treatment. Nephrol Dial Transplant. 2021 link: https://pubmed.ncbi.nlm.nih.gov/34596686/
