ERKNet Survey on long-term follow-up of patients with CUBN variants

1. Welcome

Dear ERKNet member,

We are pleased to invite you to participate in an important research study aimed at understanding the long-term prognosis and potential adverse effects of CUBN deficiency. This study is led by Dr. Aude Servais and Dr. Elsa Ferriere from Necker Hospital, Paris.

Patients with biallelic pathogenic variants in the CUBN gene typically exhibit chronic proteinuria from childhood while maintaining normal renal function into adulthood. Our research seeks to gather comprehensive data to better understand the long-term outcomes for individuals with this condition.

Contributors who provide substantial information will be acknowledged as co-authors in any resulting publications.

Thank you very much for your participation.
Elsa Ferriere, Aude Servais
and the WG chairs for hereditary glomerulopathies Kalman Tory, Kathleen Claes, Guillaume Dorval

For questions or clarification, please contact Elsa Ferriere at elsa.ferriere@aphp.fr or contact@erknet.org

Survey instructions

You will be asked to provide information on genetics, clinical and biochemical parameters at the time of 1st visit, during medical history and the last visit. To ensure a smooth experience, please have the following data collection items ready as you complete the survey.

If you prefer to fill out the survey using a Word document instead of the online tool, kindly contact us.

Question Title

14% of survey complete.