Hi to all! You know I have been talking and working for a while on the Dent patient survey. We now have the fantastic opportunity to do the survey at the RDCRN (Rare Diseases Clinical Research network) website. It is an organization supported by the NIH funding us, so the whole survey will be done completely secure and the data analysis will also be done by RDCRN. It is an opportunity we cannot miss. I now need all the members of Dent community to register at the RDCRN Dent contact registry. Follow the instructions: 1. Log on to: http://rarediseasesnetwork.epi.usf.edu 2. Go to Rare Kidney Stone Consortium 3. Chose "Join the RDCRN Contact Registry" for Dent disease The survey will be posted at RDCRN website as soon as it is approved and downloaded by the site and will be distributed to the members of the RDCRN Cotact Registry for Dent (that's why I need you to register there). Hopeful to see the results of this work!!! Lada

Thanks Lada. I went in and you have to fill out a registration form, correct? But when I clicked submit, it came back with: Failed to save information: An alert has been sent to the support group. Please try again later. So I will try some other day.

Sorry for that! People have been successful in the past but we had only one entry since I have posted this. Actually Barb tried as well and it worked. Please try again and let me know if you have problems! Also anybody else that tries. This will be very important for us to increase chances to get funded for another 5 years! Regards Lada

Done! What happened was that I was putting Daniel's birthplace as Montreal (correct), Alberta (wrong, where we live now), but it didn't tell me that there was an error on that line.

Thanks Minu! I saw that. So far only 2 people registered. I cannot stress enough how important this is. Please go to RDCRN website and do this. Think of your children and future generations to come! Lada

Dear all, We are making progress...but slowly. So far 13 people registered to RDCRN Contact registry. This registry will allow us to do the patient survey, give you back the results and to distribute to you other information on Dent disease trials. It is secure, your information will not be public. Only registered users (researchers from Mayo Clinic and University of South Florida who are sponsored by NIH) will have access to this information. It is a fantastic opportunity to do in a secure way exactly what you have asked for. Ask all available Dent patients or parents questions you wanted to know. How many people use thiazide? How many people keep specific diet? How many people had serious complications of dehydration? etc. This has never been done for Dent disease. It is patient-centered research. Research initiated with questions from patients. I have worked on this for days. It will require you 15 minutes. Taxpayers (including your own) money is invested to help people with Dent disease. Please don't let it go to waist. The time to contribute is now. Lada

Thanks Lada. I just registered my son. Thanks for all your efforts on behalf of Dent's patients.

Thank you so much! It is crucial for patients and families to participate because we can think and work and plan and create research as much as we want but without really measuring in clinical studies what is happening with individual patients, to draw conclusions and plan treatment of the disease, we don't have anything. On a personal level, I will also admit that it is very hard to keep going without getting feedback that we have a chance of getting somewhere. So thank you Deb and thanks to everybody who participates and supports Dent research. Without you there is nothing. Lada

Thank you so much! It is crucial for patients and families to participate because we can think and work and plan and create research as much as we want but without really measuring in clinical studies what is happening with individual patients, to draw conclusions and plan treatment of the disease, we don't have anything. On a personal level, I will also admit that it is very hard to keep going without getting feedback that we have a chance of getting somewhere. So thank you Deb and thanks to everybody who participates and supports Dent research. Without you there is nothing. Lada

I will do this next week. Right now, I'm helping some in-laws with a family tragedy, and can't really think about this.

I'm really sorry to hear that. Thank you.

Is this different than the Dent Disease registry my family already filled out and participated in?

YES! This is a way for us to conduct a registry research. We have support by NIH Agency RDCRN for rare diseases. They can do all regulatory work to assure security of information and analysis of information we collect in the survey. The survey is designed by us (Mayo clinic group), but we don't have the software set up to do this survey research in the secure way. Also, for all the people who did a Pilot survey for me, please do this so you can do the official survey once it is set up. We could potentially collect lots of information from patients all over! In an easy way! Some of the information we want to ask is not in our registry, we were not aware of some problems Dent patients have! Lada

Lada - Do we only register the Dent patient or should carriers register as well?

Carrier and patient would be good, because we have separate surveys for carriers and patients. Thank you for thinking about that! Lada