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Patient information from the Norwegian Vasculitis Registry

The Norwegian Vasculitis Registry (NorVas) is a national quality registry established in 2016. Its purpose is to build knowledge and help improve the treatment of vasculitis diseases.

The registry currently includes everyone over the age of 16 who has been diagnosed with ANCA-associated vasculitis or large vessel vasculitis and is being followed up at a rheumatology department in Norway. Taking part in NorVas is voluntary, and you will receive the same high-quality treatment and follow-up whether you participate or not.

In connection with consultations, you will have the opportunity to complete patient-reported outcome measures (PROMs) about your health and how it affects your daily life. This information is valuable, as it helps us understand how the disease and its treatment influence quality of life.

Information about the right to opt out and participation in Norwegian Vasculitis register (NorVas) (pdf)

Accessing your information

You have the full right to see what has been recorded about you in NorVas. If you believe any of the information is incorrect, you can ask to have it corrected.

To access your information, go to www.helsenorge.no and search for NorVas under “Helseregistre”, found under the “Services” tab.

Opting out

Participation in NorVas is based on the right to opt out. This means your data may be collected unless you actively choose not to take part. You can opt out by:

  • logging in to www.helsenorge.no
  • telling the department responsible for your treatment, or
  • contacting the registry management.

Opting out via helsenorge.no

If you do not wish to participate in NorVas, you can opt out by logging in to www.helsenorge.no. Any information already collected about you and your illness will then be deleted. If you change your mind later, you can withdraw your opt-out so that the registry may resume collecting data. 

Please feel free to contact the department responsible for your treatment or us.

Consent Form

The consent form is only used for patients in Health Central Norway (Helse Midt-Norge).

Consent form (pdf)

Questionnaires

PROM (pdf)

RAND-12  (pdf)

Contact Us

The daily management of NorVas is located at the Rheumatology Section, Neurology, Skin and Rheumatology Department (NEHR), University Hospital of Northern Norway HF.

Academic Leader
Julianne Elvenes
Christine Karlsen

Register Unit
Mai Lisbet Berglund
Tel.: 776 69015​

Register Coordinator
Ida Løken Killie

Postal Address
Norwegian Vasculitis Register
P.O. Box 20
9038 Tromsø

Email: norvas@unn.no​

 

Last updated 9/14/2026