Patient information and informed consent to the participation in the ARPKD registry study ARegPKD
نویسندگان
چکیده
Your doctor has made the diagnosis of “autosomal recessive polycystic kidney disease” (ARPKD) for your child and has asked you to participate in our ARPKD patient registry study. With this form, we want to give you an overview over the purpose of the registry, as well as potential benefits and risks of your participation. Please take some time to read the following information carefully and please consult your doctor if you have any further questions.
منابع مشابه
Recent Progress of the ARegPKD Registry Study on Autosomal Recessive Polycystic Kidney Disease
Autosomal recessive polycystic kidney disease (ARPKD) is a rare monogenic disease with a severe phenotype often presenting prenatally or in early childhood. With its obligate renal and hepatic involvement, ARPKD is one of the most important indications for liver and/or kidney transplantation in childhood. Marked phenotypic variability is observed, the genetic basis of which is largely unknown. ...
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BACKGROUND Autosomal recessive polycystic kidney disease (ARPKD) is a rare but frequently severe disorder that is typically characterized by cystic kidneys and congenital hepatic fibrosis but displays pronounced phenotypic heterogeneity. ARPKD is among the most important causes for pediatric end stage renal disease and a leading reason for liver-, kidney- or combined liver kidney transplantatio...
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