Kidney Health Initiative (KHI)

KHI Current Project

End Stage Kidney Disease Data Standards

Patient Care Issue:

Despite being one of the most data dense disease states in the world, no one data standard exists in ESRD. Creating a data standard in ESRD will have multiple benefits. First, if prospective and retrospective research utilizes a common data standard then the pace of scientific discovery may be more rapid. Second, having a uniform data standard will allow for the easier creation of scientific registries for epidemiological surveillance. Lastly, a data standard may allow the development of metrics for value-based healthcare.


Dialysis is a life sustaining therapy that generates and requires management of impressive big data worldwide. However, little standardization exists for the definitions of key data elements with enough specificity to ensure that the data is interoperable, comparable and of predictive value. There have been some promising efforts, but none is global.

Once standardized, dialysis data can become more useful when combined for purposes of registries, clinical care, value-based purchasing or research.


Launched September 2018


Publication on Data Standards

Timeframe for completion

Fall 2019


Lorien S. Dalrymple, MD, MPH
Fresenius Medical Care North America

Eric W. Young, MD
Arbor Research Collaborative for Health


Youssef Farag, MD, PhD, MPH
Akebia Therapeutics, Inc.

Michael J. Fischer, MD, MSPH
Department of Veterans Affairs

Robert N. Foley, MBChB
University of Minnesota

Emel Hamilton, MSN/INF, RN, CNN
Fresenius Kidney Care

Wael Hussein, MRCPI, MBBS, MSc
Satellite Healthcare

Eduardo Lacson Jr., MD, MPH, FASN
Tufts University School of Medicine

Marlies Noordzij, PhD
ERA-EDTA Registry

Norma J. Ofsthun, PhD
Fresenius Medical Care

John H. Sadler, MD
Independent Dialysis Foundation

Francesca Tentori, MD, MS
DaVita Kidney Care

KHI Board of Directors Liaison:

Mahesh Krishnan, MD, MPH, FASN
DaVita, Inc.

Conflict of Interest:

To view KHI's Conflict of Interest and Disclosure Policy, please click here.

To view the Workgroup's Disclosures, please click here.

If you have any questions, please do not hesitate to contact KHI at