How can data save kidneys and lives?
End Stage Renal Disease (ESRD) affects 660,000 Americans. The medicare spending associated with their kidneys exceeds the total budget of the National Institute of Health. Patients on dialysis are vulnerable to serious complications due to heightened sensitivity to what they eat, including otherwise healthy minerals found in many foods, and are at high risk of a number of complications that can prevent them from becoming transplant candidates.
How can we bring together nutritional data to inform renal patients and physicians about nutrition and treatment options along the patient journey from early diagnosis to end stage renal disease?
End Stage Renal Disease:
- The United States Renal Data System offers aggregate data on the identification, care, and costs of ESRD and Chronic Kidney Disease.
- Medicare Dialysis Facility Compare datasets enable quality of care analysis of all Medicare-certified dialysis facilities in the United States. The same site also hosts a number of other ESRD datasets Medicare uses to assess care center quality.
- The Centers for Medicare & Medicaid Services still offer 'vintage' ESRD program data for 2003-2004.
- Transplants are a big consideration in ESRD care. The Scientific Registry of Transplant Recipients supports the Organ Procurement and Transplantation Network (OPTN), and uses OPTN data to compile public reports available on the SRTR website.
- There are a number of nutritional guidelines for patients with ESRD that you might find useful. We've taken a look at the VA eKidney Clinic, the USDA National Nutrient Database for Standard Reference, and the National Kidney Foundation's guide to nutrition and dialysis.