January 2022

 

Dear KPMP Participant,

We hope you have been well since we last touched base. KPMP continues to be forever grateful to you for signing up and contributing to this life-changing research. Thank you. Your shared kidney tissue, blood and urine samples, information and time are invaluable. In this letter we’d like to share some updates with you about the steps we are taking to build a KPMP participant community.

On October 7th, 2021, KPMP had its first Participant Town Hall. During this virtual event, we heard from researchers about what they are learning from your biopsies and data, and we heard from KPMP participants around the country about what participating in the study means to them. If you missed the Town Hall and would like to watch the event, please contact us and we can make that happen. We plan to hold our next Town Hall in May 2022. We are happy to help you participate in the Town Hall and record a study participant video if you are interested in doing so.

Last year, our KPMP software team released the KPMP Participant Portal. This is a free and secure, web-based tool like a digital microscope, that lets you see images created from your own KPMP kidney biopsy. We encourage you to sign up for this tool. Please call us, or we can help you sign up at your next visit.  

KPMP Participant Portal

 KPMP recently published an article about the benefits and risks of participating in KPMP in the December 3, 2021 edition of the American Journal of Kidney Disease (AJKD). The article, entitled, A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project, describes the ethical approach our study team took to ensuring the benefits were maximized for our heroic participants. We published this article with the goal that other research studies will use it as a model in their own approaches to enrollment. The article is included with this letter.

Please share this letter with your family and friends.  If they want to learn more, use this link  (https://www.kpmp.org/for-participants) to the KPMP Introduction video. 

Your contribution to KPMP has a meaningful impact.  The KPMP would not exist without volunteers, like you, who have undergone a kidney biopsy for this study. Thank you. We hope you enjoyed learning about the tools and social support we have available to share your KPMP experience. We look forward to seeing you at your next visit. Please contact us if you have any questions or comments. 

Sincerely,

Brigham and Women’s Hospital / Boston University
Sushrut Waikar, MD, MPH
Principal Investigator
Ingrid Onul
Research Coordinator
Cleveland Clinic
John Sedor, MD
Principal Investigator
John O'Toole, MD
Principal Investigator
Emilio Poggio, MD
Principal Investigator
Jonathan Taliercio, MD
Principal Investigator
Diana Sendrey, RN
Research Coordinator
Columbia University
Krzysztof Kiryluk, MD
Principal Investigator
Andrew Bomback, MD, MPH
Principal Investigator
Jonathan Barasch, MD, PhD
Principal Investigator
Cecilia Berrouet
Research Coordinator
German Varela
Research Coordinator
Johns Hopkins
Chirag Parikh, MD, PhD
Principal Investigator
Steven Menez, MD, MHS
Principal Investigator
Pam Corona, MD, MS
Program Manager
Lauren Bernard
Research Coordinator
Alan Xu
Research Coordinator
Joslin Diabetes Center/Beth Israel Deaconess Medical Center
Sylvia Rosas, MD
Principal Investigator
Neil Roy, PhD
Sarah Chen
Research Coordinator
University of Pittsburgh
Paul Palevsky, MD
Principal Investigator
Matthew Rosengart, MD, MPH
Principal Investigator
Dan Hall
Principal Investigator
Tina Vita
Research Coordinator
Adam Burgess
Research Coordinator
University of Texas Southwestern, Dallas
Miguel Vasquez, MD
Principal Investigator
Robert Toto, MD
Principal Investigator
Shihong Ma
Research Coordinator
Yale University
F. Perry Wilson, MD
Principal Investigator
Dennis Moledina, MBBS, PhD
Principal Investigator
Angela M. Victoria-Castro, MD
Research Coordinator
Ugochukwu Ugwouwu
Research Coordinator
Melissa Shaw
Research Coordinator

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