Dent Disease


Focus Group

John C. Lieske, MD (Principal Investigator) | bio | Mayo Clinic, Rochester, MN

Lada Beara Lasic, MD, MS (Co-Investigator) | NYU Medical School, Department of Nephrology, NY

Barbara M Seide (Study Coordinator) | Mayo Clinic, Rochester, MN

Julie Olson, RN (Study Coordinator) | Mayo Clinic, Rochester, MN

Alicia Meek (Study Coordinator) | Mayo Clinic, Rochester, MN

 

Contact information:

Mailing address for records/paperwork:

Mayo Clinic
200 First Street SW
Rochester, MN 55905
Dent Disease Program Ei-SL 33

Email: rarekidneystones@mayo.edu
Phone: 800-270-4637
Fax: 507-255-0770

 

What's New?

New Patient Advocay Group (PAG) for Dent Disease patients and families being formed! It is exciting that Catherine and Austin Forrest are in the process of starting this patient group! They have a web page started and all interested patients, family members, physicians, researchers are invited to participate! Check out the new website under development: http://dentdisease.com/

New diagnostic algorithms

The RKSC investigators collaboration has published a new article that also includes updated diagnostic algorithms for the four rare kidney stone diseases in the RKSC, including a Dent algorithm: Edvardsson V, Goldfarb DS, Lieske JC, Beara-Lasic L, Anglani L. Milliner DS, and Palsson R. Hereditary Causes of Kidney Stones and Chronic Kidney Disease. Ped Neph 2013.
Article link: http://rd.springer.com/article/10.1007/s00467-012-2329-z

Save the Date: RKSC meeting ASN 2013

The RKSC will host their annual meeting at the 2013 ASN in Atlanta, Georgia on Saturday, November 9th at 12:45-1:45 EST. For additional details contact Tammy Evans: evans.tamara@mayo.edu

Save the Date: Chicago Patient Meeting

Chicago, IL

June 27-29, 2014

Details to follow

 

How Can I Participate?


1. Join the Dent Disease Registry!
The Registry is one of the easiest ways for patients to help and the Registry is also one of our most important tools to learn more about Dent disease. We encourage all Dent disease patients to join the Dent Registry. Recently our Registry enrolled its 100th patient!

• For more information on this study contact the RKSC Study Coordinators at:

rarekidneystones@mayo.edu or 800-270-4637

2. Sign up for the Patient Contact Registry on the Rare Diseases Clinical Research Network (RDCRN) site. RKSC will be posting news and updates on the RDCRN site. RDCRN will also be updating patient information on this site and patients are encouraged join the RDCRN Contact Registry to stay informed about upcoming news:

http://rarediseasesnetwork.epi.usf.edu/RKSC/register/index.htm

3. Support the Dent Disease Patient Advocacy Group.

4. Participate in other research studies of Dent Disease: Contact the Study Coordinators and they will assist you in signing up for the studies that are open for enrollment: rarekidneystones@mayo.edu or 800-270-4637

Social Media sites for Dent Disease

Facebook: http://www.facebook.com/DentDisease

Rare Share: http://rareshare.org/communities/dent-s-disease

Advocacy Organization

Dent Disease http://dentdisease.com/

Helpful links

Dent disease on Gene Review http://www.ncbi.nlm.nih.gov/books/NBK99494/

Disease Information

Disease Information for Patients

Expand All Topics | Close All Topics

Overview

Signs and Symptoms

Diagnosis

Treatments

Research

Registry

Resources