Invitation to a survey on the role of calcineurin inhibitors (CNI) in genetic SRNS

Dear colleagues,

We are very pleased that our first invitation letter to our survey on the role of CNI in children with SRNS carrying podocyte gene mutations (genetic SRNS) has received great attention with more than 40 centers contributing to approximately 150 patients with this rare diagnosis.

We feel that inclusion of data from as many children as possible will help to either establish a beneficial role of CNI in the long term preservation of kidney function of patients with genetic SRNS or prove them of limited efficiency, thus sparing children from unnecessary immunosuppression.

Eligible patients are children aged 0-18 years with SRNS and:

• A formal genetic confirmation of the presence of podocyte gene mutations associated with SRNS

or

• with presumed genetic SRNS (ie congenital or syndromic nephrotic syndrome) who were never treated with corticosteroids

and

• Treatment with a CNI (either tacrolimus or cyclosporine A) for at least 3 months with at least one-year of follow-up available

We are very thankful to the colleagues who have already joined in our efforts and we do hope to hear from more pediatric nephrology centers.

Please feel free to contact us with any questions. Colleagues who have eligible patients need to contact us by 15th December.

Warm regards,

Kjell Tullus                                            Georgia Malakasioti

Pediatric Nephrologist                        Pediatric Nephrologist

Great Ormond Street Hospital         Aglaia Kyriakou Children’s Hospital

London, UK                                           Athens, Greece

Kjell.tullus@gosh.nhs.uk                   g.malakasioti@nhs.net