ERKNet Survey | NSAID in patients with NDI or Bartter Syndrome

Dear friends and colleagues

On behalf of the working groups Inherited Kidney Diseases from ERA-EDTA and ESPN and Tubulopathies from ERKNet we invite you to participate in a new study of the effect of long-term use of non-steroidal anti-inflammatory drugs (NSAID) on kidney function (as assessed by creatinine). 

Many of you participated in our recent study on the long-term outcome in nephrogenic diabetes insipidus (NDI) and many thanks for doing so! While it provided valuable information, this study also raised some questions, most prominently on the effect of long-term NSAID on eGFR. We think, this is a very important question that deserves further investigation and have developed another questionnaire to address this. We have expanded the eligible patient cohort to also include Bartter syndrome, another tubulopathy for which NSAID are commonly prescribed.

To make this cohort as “pure” as possible, we have restricted it to those patients who have a genetically confirmed diagnosis (but you do not need to provide the exact mutation information, if this violates your local data protection laws). Any of these patients, whether or not they received NSAID are eligible, as long as they are 6 years or older at last follow-up (to ensure a meaningful time of exposure for those who received NSAID).

We would be grateful, if you could again enter information for your patients so we can address this important question together. As before, anybody entering information on patient(s) will be co-author, either indirectly, as part of the “NSAID in tubulopathy” consortium or, directly, in the main author list, if you provide information on 3 or more patients. 

We have tried to make the questions and data entry as simple as possible to minimise your time and effort for this. However, for each patient a new survey needs to be filled.

The questionnaire will be open for 8 weeks, but if you need more time, feel free to contact us directly.

Many thanks for your help! We are looking forward to share the results with you!

You can access the survey by clicking here: https://www.surveymonkey.de/r/ERKNet_NSAID_NDI_Bartter

Yours 

ERKNet team on behalf of

Francesca De Zan

Francesco Emma

Detlef Bockenhauer

 


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