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ORPHAcoding in Norway

The Norwegian National Advisory Unit on Rare Disorders (NKSD) works to improve the coding of rare disorders in patient records and registries. We are a member of the Orphanet network that develops and maintains the ORPHAcodes, a medical nomenclature specifically for rare disorders.

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Publisert 19.09.2022 / Sist oppdatert 11.05.2023

NKSD has established a national Orphanet hub which supports the use and implementation of ORPHAcodes and the Orphanet nomenclature in Norway. By contacting the hub, you can get help with questions related to the use of ORPHAcodes, and support for implementing the coding system in health information systems (HIS). 

Informasjon om NKSDs samarbeid med Orphanet på norsk 

In addition to codes for all the approximately 6,000 rare disorders, a comprehensive classification of all rare conditions have been created. On the Orphanet website,​ you can find diagnosis descriptions and information about professional and expert centres, research and patient organizations in Europe. ​

National hub for ORPHAcoding in Norway is part of the EU project Orphanet Data for Rare Disease (OD4RD), work package 4 (WP4). The object of WP4 is to ensure support for the local implementation of ORPHAcodes for health care providers involved in European Reference Networks (ERN). ​ ​A total of 14 countries have established national hubs for ORPHAcodes, and there is close collaboration between the hubs in the different countries. 

Lene Martinsen, lenma2@ous-hf.no, is responsible for the Norwegian hub.

ORPHAcodes in patient records 

ORPHAcodes have been implemented in the patient health record DIPS at Oslo University Hospital. See the guideline on how to code your patients.​​ The codes are only available in DIPS Classic. Implementation in DIPS Arena, the next application version, is in progress.​

If you want to explore the possibility of implementing ORPHAcodes at your workplace, please, contact the National Hub for ORPHAcoding in Norway. 

Norwegian Registry on Rare Disorders 

NKSD operates the Norwegian Registry on Rare Disorders Sjeldenregisteret.no. Diagnosing the patients with ORPHAcodes is a prerequisite for reporting the patients to the registry. 

Training and courses 

An e-learning course about ORPHAcodes is being developed. ​

Contact the National hub for ORPHAcoding in Norway​ if you are interested in having a course at your workplace. We organize courses both digitally and inperson as needed. 

The National Orphanet team​


Norwegian Orphanet Team 

Lene Martinsen, Senior adviser, Information scientist, lenma2@ous-hf.no  

Maria Emilie Gresslien, Adviser, Information scientist, magres@ous-hf.no 

Leader of NKSD and National Coordinator Orphanet Norway: Stein Are Aksnes, steaks@ous-hf.no 

​

Norwegian Registry on Rare Disorders 

Linn Bjørnstad, Researcher, linbj3@ous-hf.no  

Mette Salomonsen, Adviser, mesalo@ous-hf.no​

Medical advisors 

Ingrid B. Helland, ihelland@ous-hf.no  

Mari Bakken,  UXMABK@ous-hf.no ​


Help line: +47 800 41 710  

sjeldne-diagnoser@ous-hf.no  


Credits

The content of this website has been developed in the frame of the OD4RD project which has received funding from the European Union's EU4H under grant agreement N°101070531.​


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