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RARE-X.
What is Data Collection?
Data collection is a process to collect information about you and your experience with Dent disease. You have control over your information. You choose who has access to your information. The settings are in your control, able to be changed at any time. Hopefully, your data will be analyzed by doctors, researchers, or drug developers who can use it to get a faster diagnosis or to better understand Dent disease and how to potentially treat or cure it.
Why Should I Join?
Having all of our Dent data in one place means that information can be shared and analyzed by doctors, researchers, or drug developers who can use it to get a faster diagnosis, or to better understand Dent disease and how to potentially treat or cure it. Additionally, we can help other kidney disease patients by sharing our data with researchers looking at overall kidney health. Our volunteers will not have access to your private medical information.
What is the purpose of the Data Collection Program?
Short term: the Data Collection Program supports diagnosis, drug discovery, and development. It increases Dent’s visibility as a rare disease and supports other diseases that are also seeking their cure.
Long term: the Data Collection Program will provide important information on specific body systems that may also be impacted by Dent disease over time. This will help others to recognize and treat symptoms which could aid in the treatment of Dent disease.
Our Team.
"Alone we can do so little; together we can do so much." – Helen Keller
![Jen-Meyer[1].jpg](https://static.wixstatic.com/media/7ac305_08c80b26f0c44bfcbd47176c3da62301~mv2.jpg/v1/fill/w_55,h_86,al_c,q_80,usm_0.66_1.00_0.01,blur_2,enc_auto/Jen-Meyer%5B1%5D.jpg)
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![Debra-Duarte[1]_edited.jpg](https://static.wixstatic.com/media/7ac305_7ea2f75b49cd4876917b2d17fba41612~mv2.jpg/v1/fill/w_60,h_86,al_c,q_80,usm_0.66_1.00_0.01,blur_2,enc_auto/Debra-Duarte%5B1%5D_edited.jpg)
![Cal-Goodrich[1].jpg](https://static.wixstatic.com/media/7ac305_c277d69b549242ffb12d7ef5c9b6ad11~mv2.jpg/v1/fill/w_70,h_86,al_c,q_80,usm_0.66_1.00_0.01,blur_2,enc_auto/Cal-Goodrich%5B1%5D.jpg)
![Screen-Shot-2022-04-06-at-1.25.38-PM[1].png](https://static.wixstatic.com/media/7ac305_81f56880c48f444492a2ee54a225f140~mv2.png/v1/fill/w_86,h_60,al_c,q_85,usm_0.66_1.00_0.01,blur_2,enc_auto/Screen-Shot-2022-04-06-at-1_25_38-PM%5B1%5D.png)
Chair - Medical/Scientific Advisory Board
Board Member
Dr. Steven Scheinman
Medical Scientific Advisory Board.
Steven J. Scheinman, MD
Chair - Medical/Scientific Advisory Board Dent Disease Foundation
Geisinger Medical Center, PA
Adult Nephrology Internal Medicine
Gema Ariceta, MD PhD
Vall d’Hebron Research Institute Barcelona, Spain
Pediatric Nephrology
Lada Beara Lasic, MD
NYU Langone Health, NY
Adult Nephrology
Michelle A Baum MD
Boston’s Children’s, MA
Pediatric Nephrology
Gerard Cantero, PhD
Vall d’Hebron Research Institute Barcelona, Spain
Research Scientist
Félix Claverie-Martin, PhD
Our Lady of Candelaria University Hospital
Santa Cruz de Tenerife, Spain
Research
Molecular Genetics
Lawrence Copelovitch, MD
Children’s Hospital of Philadelphia, PA
Pediatric Nephrology
Monica Duran, PhD
Vall d’Hebron Research Institute Barcelona, Spain
Research
PhD in Dent Disease
Jenny Gallop, PhD
University of Cambridge, UK
Research Scientist
Dent Disease Type 2
Anna Greka, MD PhD
Broad Institute, MA
Adult Nephrology
Internal Medicine
Rajat M. Gupta, MD
Harvard Medical Center, MA
Genetics
Cardiovascular Medicine
Robert Isom, MD
Stanford Healthcare, CA
General Nephrology
John Lieske, MD
Mayo Clinic, MN
Adult Nephrology
Internal Medicine
Baisong Lu, PhD
Wake Forest Institute of Regenerative Medicine
Winston-Salem, NC
Research
Gene Therapy
Gene Editing
Ana Meseguer, PhD
Vall d’Hebron Research Institute Barcelona, Spain
Research
Head, Renal Pathophysiology Group
Raoul Nelson, MD PhD
University of Utah Primary Children’s Medical Center
Salt Lake City, Utah
Chair, Pediatric Nephrology
David J. Sas, DO
Mayo Clinic, MN
Pediatric Nephrology