OBJECTIVES : To identify RWD sources available for the rare renal diseases IgAN, MN and C3G globally in order to summarize and understand the availability of RWD in these rare diseases and support the design and potentially selection of data sources for future observational studies.

METHODS : A literature review was conducted to identify RWD sources for IgAN, MN and C3G using Medline and EMBASE from inception until May 2019. Retrieved results were screened to devise a list of unique data sources and relevant meta-data (type of data source, study design, population size, epidemiology, demographics, clinical, economic and humanistic burden, follow-up duration, data access and linkage, etc.) was extracted.

RESULTS : Of the 2,926 retrieved publications, 173 unique RWD sources (IgAN only: 28; MN only: 32; C3G only: 3; IgAN & MN: 91; IgAN, MN & C3G: 19) were identified. There were 61% generic and 39% disease specific RWD sources. Half of the data sources (50%) covered Asian countries, followed by Europe (33%) and Americas (12%). Majority were administrative data sources (70%), followed by registries (20%). Data sources recorded minimum 5% and maximum 56% of the 68 assessed variables. The most commonly reported (>90%) variables were age, sex and biopsy as mode of diagnosis; quality of life, caregiver burden, and details of hospitalizations were the least reported (<1%) ones across all the three indications. Patients’ baseline eGFR and proteinuria levels were captured in >60% and >80% data sources, respectively. Possibility to access was actively reported in 21% of data sources.

CONCLUSIONS : This comprehensive overview identified RWD sources for IgAN and MN in certain geographies, with limited availability of existing RWD for C3G. The overview might provide the base for identification of opportunities for future partnerships and more efficient and sustainable use of RWD.