In 1988, the us registry of the renal data system (USRDS) was created to meet national registration requirements. The USRDS Coordinating Center published the first annual ESRD (ADR) data report in 1994 and the ADR remains a comprehensive source of data for the performance assessment of CKD and VORdialysis dialysis. At the end of October, the session of the American Society of Nephrology (ASN) returned to San Diego. Thousands of kidney people from around the world flooded the convention center and flocked to walk along the sunny sidewalk that runs along San Diego Bay. Dockless electric scooters were crazy outside the conference. Based on my occasional data collection, there was a regular separation between cautious nephrologists who couldn`t believe that someone in their right mind would mount one of these things, especially without headphones, and wild and crazy nephrologists who immediately downloaded the app and jumped on board. I won`t say where I stand on this big gap! The USRDS Coordinating Center has a number of standard analysis files (SAFs) that provide patient-specific data and the installation of the USRDS database to support research on patients with kidney disease. FAS, which provides easy access to the data used in the annual report`s analyses and reference tables, can cover most of the research needs. Researchers who must associate external cohorts with the USRDS database may apply to the National Institute of Diabetes and Digestive and Kidney Diseases for data collection from the USRDS Contracting Officer Representatives (COR). This process is described in more detail in our merged data queries page. I am sure that, as stated in the AJCD article, you lack claim data – even if supplemented by clinical data – « subtle clinical outcomes » that affect clinician treatment decisions.

The authors of the AJKD point out that qualitative data such as patient experience in care are often absent and are therefore not taken into account in determining and rewarding delivery. One example cited in the article is that QIP`s performance for dialysis facilities that deal with higher-risk groups of patients may be worse, which may result in unfair payment penalties. NCHS has linked various surveys to the end-stage renal disease (ESRD) data of the U.S. Renal Data System (USRDS). The link between NCHS survey participants and USRDS-ESRD data is used to study changes in health status and health care use in patients diagnosed with ESRD. The core SET of FAS contains basic patient data and is required to use other FAS. Basic Fas includes demographic information, payer and treatment history for each patient, limited transplant data, supplier data, and data from numerous USRDS special studies. About half of the researchers using USRDS FAS only need these records. Transplant data contain detailed transplant and transplant follow-up data collected by the Centers for Medicare – Medicaid Services (CMS) and the Procurement and Transplantation Network (OPTN).

Hospitalization data can be found in the hospital`s dataset. Medicare billing data is available after each year and by selecting institutional, physician/supplier or part D files. All of this brings us back to the learning loop. The data provide valuable information for the design and refinement of clinical interventions. In our EHR era, clinical data that has been added to other datasets offer some performance criteria used today for financial rewards and penalties.