Lymphoid-lineage cancers (LC: lymphoma, chronic lymphocytic leukemia, multiple myeloma, and their precursors) share many epidemiological and clinical features. To develop data-driven hematology, we gathered electronic health data and created open-source data processing pipelines to create a comprehensive data resource for Danish LC Research (DALY-CARE) approved for epidemiological, molecular, and data-driven research. We included all Danish adults registered with LC diagnoses since 2002 (n=65,774) and combined 10 nationwide registers, electronic health records (EHR), and laboratory data on a high-powered cloud-computer to develop a secure research environment. We herein exemplify how DALY-CARE has been used to develop novel prognostic markers using biobank data, real-world evidence to evaluate the efficacy of care, and medical artificial intelligence algorithms deployed directly into EHR systems. The DALY-CARE data resource allows for development of both near real-time decision-support tools and extrapolation of clinical trial results to clinical practice, thereby improving care for patients with LC.

CB received travel grants from Octapharma. CMF received funding from Octapharma. TL received travel grants from AbbVie outside this study. NV received consultancy fees and funding from AstraZeneca outside of this work. ECR received consultancy fees and/or travel grants from Abbvie, Janssen, and AstraZeneca outside of this work. CUN received research funding and/or consultancy fees from AstraZeneca, Janssen, AbbVie, Beigene, Genmab, CSL Behring, Octapharma, Takeda, Eli Lily, MSD, and Novo Nordisk Foundation. All other authors declare no competing interests to disclose.

The project was funded by the Alfred Benzon foundation, the Danish Cancer Society (grant R269-A15924), and the CLL-CLUE project funded by the European Union. This work was based on data analyzed at the national infrastructure for personal medicine hosted at the Danish National Genome Center, which is supported by the Novo Nordisk Foundation (grant agreement NNF18SA0035348 and grant agreement NNF19SA0035486). This work was supported by Danish Data Science Academy, which is funded by the Novo Nordisk Foundation (NNF21SA0069429) and VILLUM FONDEN (40516). The PERSIMUNE project contributed data and achieved funding from the Danish National Research Foundation (#126). WGS is achieved through collaboration with deCODE genetics (Reykjavik, Iceland).

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The DALY-CARE protocol has been approved by the Danish Health Data Authority and Danish National Ethics Committee (approvals P-2020-561 and 1804410, respectively).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

According to Danish legislation, the collection of electronic health register data is mandatory, and data were collected for research purposes in accordance with the approved protocol (see Supplemental Appendix). The Danish National Ethics Committee granted an exemption for patients to provide informed consent in order to share electronic health data. The exemption was based on the potential high impact for the patient group in question, thus considered to outweigh the issues raised by an exemption. This exemption was also extended to allow analyses of biobank samples including extensive molecular analyses for the retrospective part of the cohort, while for such prospective sampling, written informed consent was provided by patients to collect and analyze biobank samples and electronic health data. Due to pseudonymized but not fully anonymized nature of data, access to the data resource will be based on a Data Usage Agreement (named Data Processor Agreement [DPA], see Supplemental Appendix 1 for template). The DPA will specify the analyses performed on a collaborative basis, these analyses should be within the approved DALY-CARE protocol (Supplemental Appendix 2). All analyses must be performed on the DALY-CARE data resource at NGC. Except for pathology notes and medical notes, dummy tables are presented in Supplemental Appendix 3. The underlying code for this study is available on the DALY-CARE data resource and can be accessed on a collaborative basis on reasonable request to the corresponding author. Essential parts of the codebase are publicly available on Github and regularly updated.