Dear all, We are proud to announce that we have been approved and activated for our first Dent disease clinical trial sponsored by NIH. We think that phosphorus plays a major role in Dent patients and that phosphorus supplementation (or higher phosphorus in diet) might be a better way to control calcium leak in the urine, kidney calcifications and kidney stones. It might contribute to bone health. This might be better and safer than thiazide diuretics who can have serious side effects, but has to be tested in a clinical trial. We will look at blood and 24 hour urine composition in relation to diet. We will have 2 groups of patients: 1. Patients who are older than 18 AND have kidney function with GFR >40 ml/min will get 2 measurements. before and after phosphorus supplementation for 14 days. They will get 2 7day food diaries. 2. Patients younger then 18 OR who have GFR <40 ml/min will not get phosphorus and will only have one measurement of blood and urine and one food diary x7d. We will need blood tests at least 3 months before enrolling to have the accurate GFR. Dr. Scheinman likes this protocol very much and he will try to expand it to Lowe syndrome patients who have kidney disease similar to Dent patients. We will contact all patients from our registry who qualify. Anybody from the US who is interested and is NOT in our registry can email me at lada.bearalasic@nyumc.org. Please ask me any questions you have! Let's find the answers. Lada

A new announcement is that we finally have approved consent for children for the FGF 23 trial. This will enable us to do measurements of important hormones involved in calcium and phsophorus metabolism (including FGF 23), measure components in 24 hour urine and relate to contents in diet. The only requirements are: 1. 7-day food diary. 2. One blood draw 3. One 24h urine We have budget for 10 children. The time is limited since our grant might expire in June, and I really don't want the money we were given to go to waist! If you are interested please contact us at: rarekidneystones@mayo.edu lada.bearalasic@nyumc.org

Is my son Zander wolf registered in this study?. I returned the papers but have not heard back. Zander mom, T Tieshiea@icloud.com is a good way to reach me. He is 10 and I figured he fit the profile.

Great! Thanks for reaching out. I did not hear from the research coordinators but will ask. I'll email you. Lada

Thanks. I appreciate your time. T

Do you have the results of this clinical trial yet? If so, should we increase phosporous in the diet and which foods are best?