Welcome to the Subregistry Initiative at ERKReg

We warmly welcome researchers interested in creating a subregistry within the ERKReg platform. This initiative offers a unique opportunity to lead focused research projects that address specific clinical or scientific questions related to rare kidney diseases.

By establishing a subregistry, you can:

  • Advance specialized research by collecting targeted data aligned with your research questions
  • Receive regular recruitment updates and visibility through ERKReg’s network
  • Join a collaborative research environment, including participation in trainings and annual ERKReg meetings
  • Access support for data analysis, helping you disseminate results through publications and conferences

Creating a subregistry is not only a chance to explore your scientific interests in depth—it also contributes to the broader mission of improving care and knowledge for rare kidney conditions.

If you're ready to take the next step, please download and complete the following Subregistry request template.

Data Dictionary: Please download the data dictionary and make sure to submit it together with your subregistry request. If you need support, the document includes a section with instructions on how to select the variables, and if you have any questions, you can contact us at subregistry@erknet.org

Important Notes

  1. Only ERKNet members with active ERKReg participation can serve as Principal Investigator in a sub-registry.
  2. The Principal Investigator must be affiliated with the relevant ERKNet working group for the disease of interest.
  3. Co-investigators may include both ERKNet members and external collaborators, provided they are active ERKReg participants.
  4. Members of the scientific committee must have documented scientific expertise in the disease area, demonstrated by relevant publications within the last five years.
  5. The members of the scientific committee must collectively be affiliated with centres that, in total, have enrolled at least 10% of the total ERKReg population for the disease or disease group of interest. 

Once filled in, send it to our coordination team at: subregistry@erknet.org

We look forward to your contribution and to supporting your research journey!