Medullary Sponge Kidney Network

Medullary Sponge Kidney Network Medullary Sponge Kidney is a rare disease sometimes associated with inexplicable pain. This study will help us understand the link between MSK and pain.

If you have MSK and want to participate in our online study concerning the relationship between MSK and pain, or if you want to learn more about the study or the disease, please go to this website: https://www.msknetwork.it/

If the link does not work directly please copy and paste the URL into your browser and follow the Questionnaire tab at the top of the page. If you choose to participate you will be asked to upload a copy of a signed informed consent as well as a radiological medical report stating that you have MSK. If you qualify for the study you will be contacted by MSKNetwork. With your help we can try to understand this rare disease and its association with pain.

20/11/2014

Hi there! We have had a problem with one of the applications. If you sent in an application and provided an email with .net as the extension, could you please make sure that you have sent in your medical record? Please email it to Dr. Gambaro or upload it to the application page if it allows you to do so. Thank you.

26/10/2014

Thank you all for this new wave of support. We have finally started to receive submissions for our survey!

Again, please reach out with any general questions or technical concerns about the survey. There was one concern about a technical difficulty: after receiving the acceptance code the questions were not popping up-- is this still happening? We are doing whatever we can to make this as easy as possible for you all.

22/10/2014

MSK Community--

I hope you are all well. I would just like to give you an update on our research: we still have very few participants and are awaiting your participation! Please feel free to reach out with any questions or comments you may have.

In consideration of your safety and anonymity in our survey, we have confirmed (again) not only with our IT department here in Italy, but with David Goldfarb (MSK/Kidney stone expert at NYU Medical Center and VA Hospital, NYC) and his research coordinators that our website is safe, encrypted, and will not be used for any purposes besides this specific scientific research.

Again, feel free to reach out and message this group if you have any questions.

We hope that you can help us help you get recognized by the medical community through this research.

Best,

MSK Network

24/07/2014

The link has now been fixed! Thank you for your patience and we apologize for any inconvenience it may have caused.

We have investigated the problem with accessing our questionnaire via Facebook. If you cannot access the page via the li...
23/07/2014

We have investigated the problem with accessing our questionnaire via Facebook. If you cannot access the page via the link provided, please copy and paste https://www.msknetwork.it into your web browser and click on the Questionnaires tab at the top of the page.

Looking forward to your submissions!

This web site is dedicated to patients with Medullary Sponge Kidney (MSK). If you wish to know more on this rare disease you are welcome. Following requests by MSK patients, I have started an on-line scientific project to obtain insights on this disease from the patients’ perspective. If you have MS…

17/07/2014

Thank you all for liking our page! We hope you will all participate in our online survey so that we can help each other move forward in understanding this painful and rare disease.

01/07/2014

The online questionnaire is now available! If you have MSK and pain please consider participating in our survey.

https://www.msknetwork.it

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