Early Steps to Transplant Access Registry (E-STAR)

Benefits Include:

• Opportunity to collaborate with a multidisciplinary group across 4 different geographic regions with the common goal of improving transplantation rates and eliminating disparities in access to kidney transplant
• Ability to participate in novel data collection that is invaluable to understanding early steps in the transplant process
• Access to a center-specific E-STAR Data Dashboard with information on referral, evaluation start, waitlisting at the network and center-level
• Ability to understand important metrics related to your center’s referral, evaluation start, and waitlisting and develop strategies to improve access to transplant if lower than expected before the implementation of the federal mandate
• Ability to access this data for your own research on early steps in the transplant process
• Receive an implementation guide on how to use the data dashboards to address barriers to improving access to transplant at your center
• Aid in the dissemination of important information identified through collecting this data and quality improvement projects

Frequently Asked Questions

What will it cost for my transplant center to participate?   
There are no direct costs currently, and we do not anticipate a cost for participating. Our current funding supports the data coordinating center and the expansion of this data collection.  

What information needs to be shared with the data coordinating center?  
Patient identifiers (e.g., social security number, DOB), date of referral from a dialysis facility to a transplant center, and start of the transplant evaluation date  

I’m worried about the legal/regulatory issues with sending patient data – will we need to sign data use agreements with the data coordinating center?  
The ESRD Networks, as part of their CMS conditions of participation, have legal oversight of kidney patient data in your respective region, and they already have identifiers for patients with kidney disease. So, no additional data use agreements are necessary if your ESRD Network is supporting the effort.  

What resources does my center need to commit to submitting to E-STAR?
Typically, the initial data pull will require 1-2 IT personnel and the process takes approximately half a day to 1 day. This varies for each transplant center, since EMR systems differ between centers.   

How often do we submit the data?  
In our current data collection schedule, data is collected annually. 

Will other centers see our data?  
No, each transplant center will only be able to access the data specific to your center, including the data displayed in the transplant center feedback reports. Aggregate data for the region will have all patient and transplant center identifiers removed by IPRO.   

How do we access REDCap?  
REDCap is accessed through a website link; only those who are given a REDCap account can log in and access the submission portal.   

What format does the data have to be in for submission?  
The data should be uploaded to REDCap via a comma delimited file (CSV). We provide the Excel data template.   

What years are you interested in?  

• Newly participating centers: January 1st, 2014 – December 31st, 2024
•  Centers who previously participated (2021 round of data collection): January 1st, 2020 – December 31st, 2024​
• Centers who participated in the last round of data collection: January 1st, 2023 – December 31st, 2024​

Is there technical support for our IT staff? Who to contact regarding questions? 
Yes! Your main points of contact for troubleshooting are Svetlana Lyulkin at IPRO (SLyulkin@ipro.org), and Jade Buford at the Regenstrief Institute (jade.buford@regenstrief.org)