Brief information on the NKR in english

 

Objectives of the German Adrenocortical Carcinoma Registry (NKR)

Basic objective of the NKR is to improve the care of patients with adrenocortical cancer (ACC). The registration of as many patients as possible helps to collect data for the prognosis and prospects of success regarding different treatment plans. This data will be taken into consideration for planning prospective studies. With this registry, the recruitment of patients for prospective studies will be significantly facilitated. In this way – and in cooperation with networks in other countries (e.g. in Italy and France) – a structure allowing systematic  improvement of therapy will be developed.

 

Who can take part at the ACC registry (NKR)?

Every doctor taking care of patients with ACC can enter patient’ data into the ACC registry (NKR). Therefore, the doctor or also the patient himself should contact the organizers of the NKR directly and the relevant data will then be entered.


 How does the NKR work?

Registration of a patient is very easy. All you have to do is contact us. First we need the informed consent (36.4 kB)of the patient, then we will request all relevant data (tumor stage, surgery reports, histology report, etc.). This data will be entered by us and then used for different statistical evaluations. Personal information will be treated strictly confidentially and is subject to general data privacy regulations. Processing, transfer and particularly the publication of data are always in anonymized. Furthermore, in cooperation with local physicans, the NKR provides detailed information on the optimum care for ACC to registered patients.