Norwegian Porphyria Centre - NAPOS

The Norwegian Porphyria Centre (NAPOS) is located at Haukeland University Hospital in Bergen, and was established in 1999 by The Norwegian Ministry of Health and Social Affairs. 

 
The main objective of NAPOS is to optimize the diagnostics, treatment and follow-up of patients with porphyria, in accordance with patient needs. NAPOS will accomplish this by remaining updated in the professional field of porphyrias, by gathering experiences from patients and health personnel, and by spreading knowledge to health personnel, patients and their kin, as well as conducting research and development.
Read more about Norwegian Porphyria Centre - NAPOS

Norwegian Porphyria Centre - NAPOS

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European Porphyria Network (EPNET)

The European Porphyria Network (EPNET) is a functional network of specialist porphyria centres/laboratories. EPNET’s aim is to improve the lives and healthcare of porphyria patients i.e. by improving the diagnosis and treatment of these rare conditions. More information about EPNET can be found on www.porphyria.eu.

EPNET EQAS

The EPNET External Quality Assessment Scheme (EPNET EQAS) covers analytical, postanalytical and clinical aspects for all porphyria-related biochemical analyses.

 
The EPNET EQAS includes one shipment, consisting of two sets of biological materials for porphyria analysis and corresponding feedback reports. The biological materials consist of fresh frozen urine, faeces, plasma, whole blood and pellet of red blood cells from an actual patient. The samples are sent in March stored in dry ice (as far as possible) and will be delivered by express service to all participating laboratories. 

 
The two sample sets are to be analysed in March and in September. The sample sets are accompanied by clinical case histories and should be analysed in the routine procedures for all porphyrin analyses available at the laboratories. 

 
Participants are asked to report the results of their analyses and a diagnosis based on these. The feedback report consists of a detailed report comparing the participating laboratory’s results with anonymized results from other laboratories, as well as advice on methods of measurements and diagnostic procedures.

 
Apply for participation: 
EPNET registration form.docx

 
Download a feedback report example: 
EPNET EQAS 2014 Feedback report example.pdf

 
Aarsand AK, Villanger JH, Støle E, Deybach JC, Marsden J, To-Figueras J, Badminton M, Elder GH, Sandberg S. Clin Chem. 2011 Nov;57(11):1514-23. 

European Porphyria Registry (EPR) 

The European Porphyria Registry (EPR) is a multi-centre, international, observational prospective cohort study to include all porphyrias. As a first step, the EPR is developed for patients with acute intermittent porphyria (AIP), but will with time be expanded to include all porphyrias. 

 

Objectives of the European Porphyria Registry
The EPR aims primarily to conduct an investigation of the natural history, efficacy of treatment regimens and actual clinical practice for people with porphyria across Europe. It also aims to improve quality of care and serve research.

Recruitment of participants
EPR participants are recruited by the European Porphyria Network’s (EPNET) porphyria centres of expertise or by physicians with a special interest in porphyria. 

 
Patients will be informed about the project and will in most countries, depending on local ethical laws, be asked to sign a consent form. Participants are recruited when their diagnosis is established (symptomatic or as part of predictive testing), for treatment and for follow-up. 

 
Data will be collected during regular and emergency visits to the hospital or primaryhealth care. The registry will record data such as gender, date of birth, porphyria diagnosis, laboratory test results, symptoms and treatment. Physicians are able to enter consecutive visits for the same participant and have access to their own data.

 
Confidentiality and data protection
Information included in the registry is anonymous (i.e. each record will have a personal pseudonym/code), so that nobody, except the treating clinician can identify the participant. Data stored in the registry is transmitted via a secured encrypted internet system, so that nobody else using the internet can gain access to it. 

 
 The registry is located at Haukeland University Hospital, Bergen, and has a license from the Norwegian Data Inspectorate in accordance with the EU Data Protection Directive (reference no. 12/00657-3/1UR). 

 
 In addition to the data protection, porphyria centres of expertise are required to obtain national and/or local ethical committee approval. All members of EPNET have signed a strict confidentiality agreement concerning access and the publication of data.

 
Research
Approval by an EPR Steering Committee will be required, as well as local ethical approval for the specific research project when relevant. 

 
 If you are a patient and require further information on the EPR, please contact your porphyria centre of expertise or the EPR at epr@helse-bergen.no

 
 If you are a healthcare professional working with porphyria patients and would like to start using the registry, please contact your local/national porphyria centre of expertise to find out if they are a member. If they are not, you can contact us at epr@helse-bergen.no

 
Funding
The development of the EPR has been funded by NAPOS, Bergen, Norway and the Directorate General for Health & Consumers (DG SANCO), Brussels, Belgium.

Contact

How to get to the hospital

​There are several ways of getting to Haukeland University Hospital by public transport. Here follows a brief summary.

​​​​​​​The term Pasientreiser (patient travel) is used to describe travel to and from authorised treatments. The hospital is responsible for providing patient travel and will meet the cost of the cheapest mode of travel on behalf of the patient. You can read more on the Pasientreiser website​. The website also contains information about the Helseekspress and Helsebuss bus services.

Bus
Several scheduled bus routes stop at the hospital. There is also a number of commuter bus routes running between different parts of Bergen and the hospital.
Skyss has produced a dedicated route map for Haukeland University Hospital (PDF)​ showing which bus routes stop at the hospital. At Skyss.no you will find complete bus routes with details of stops and departure times.
Tide and Nettbuss operate express coaches on several long-distance routes to the centre of Bergen.

Bybanen light railway
The closest Bybanen station is Kronstad. Walking from Kronstad to the hospital takes around 10 minutes. Timetables are available at Skyss.no.

Taxi
There are usually taxis available at the taxi rank outside the main hospital building (Sentralblokka). If not, our receptionists are on hand 24 hours a day and can help book a taxi for you.

Train
Bergen Train Station in the centre of Bergen is the closest mainline station to Haukeland University Hospital. The distance between the station and the hospital is around 2.5 km and is served by several bus routes.

Air
Bergen Airport in Flesland is just under 20 km from Haukeland University Hospital. There is no direct airport bus between Haukeland and Bergen Airport, but you can take the airport bus to and from the centre of Bergen.

Waiting areas
There is a separate waiting area near the reception in the main hospital building (Sentralblokka) for patients and next-of-kin waiting for transport.

Parking

​Parking facilities at Haukeland are divided into separate zones in and around the hospital grounds.
​​
Parking spaces are very limited, however. Out of consid​​eration for those who need to travel to the hospital using their own car, we strongly urge those who are able to do so to use public transport​.

Read more about parking

Practical information

Food and catering

Library

The patient library allows patients and their next-of-kin to borrow books, DVDs and periodicals.

We have a large selection of books, comic books, audiobooks, digital books/cards and PlayStation, Wii and Xbox games, as well as DVDs, CDs, periodicals, newspapers and music.
We also lend DAB radios and playback equipment for films, audiobooks and music.

Opening hours
Monday, Wednesday and Friday 11.30–15.30.
​Tuesday and Thursday 11.30–17.30.


Book trolleys
Every Monday, Tuesday and Thursday we visit the departments with our book trolley. If you would like to borrow something but are unable to make it to the library, feel free to contact us during opening hours, and we will deliver the requested material to you.


Computers and printers
The library has a public computer and printer/photocopier. Patients and next-of-kin are welcome to use the internet, do their online banking, print off plane tickets etc.


Visual art
We also lend visual art. Please contact us for more information.

Pharmacy

​There is a pharmacy in the foyer of the main hospital building (Sentralblokka). This is a public pharmacy operated by Sjukehusapoteka Vest.

Read more about this

Visiting times

​Ordinary hospital visiting hours are between 17.00 and 20.00. Most departments are also able to welcome visitors outside these times. We ask that visitors show consideration for other patients by going to the day room, for example.

If a patient is too ill to leave the room, we kindly ask that you arrange any visits outside normal visiting hours with the staff in the department in advance.

Waiting areas

Patients waiting for transport may do so in a designated waiting area in the foyer in the main hospital building (Sentralblokka). The waiting area is designed to make the wait as comfortable as possible for both patients and next-of-kin.

Opening hours
Staffed waiting area Monday to Friday: 08:15–17:00
Telephone: 05515

The waiting area offers reclining chairs, coffee tables with seats, magazines and coffee.

In the daytime the waiting area is staffed by two transport planners from the Department of Patient Travel. The transport planners are not medically trained but can assist you if there are any changes to your planned travel.

  • Patient travel must be booked by the discharging department before the patient arrives in the wai​ting area.
  • The departments are responsible for referring patients to the waiting area based on a medical assessment.
  • Patients who need to wait longer than 2 1/2 hours for their booked travel should do so in their department.
  • The department should make its assessments, including medical assessments, on the basis that the waiting area is not permanently staffed and not staffed by medical personnel.

Patients travelling by air may contact the hosts in the waiting area, who will help organise an airport transfer.

In special circumstances the waiting area may be unmanned for limited periods during opening hours.

  • Patients who require care and who are in the waiting area at ordinary closing time will be referred back to the discharging department. The discharging department will then look after the patient.
  • Patients who have been allocated patient transport after 15.30 and who require care must wait in their department. Those who do not require care may wait at the edge of the waiting area.

Wireless Internett

​​​​​​​​​​We are happy to offer free wireless internet access to patients and visitors.


To access the WiFi service, connect to the gjest.ihelse.net network. Open your browser, to get access to username and password.

New users
For first-time usage, access your Web Browser to register your relevant details to receive a username and password via your registered mobile number, with immediate access available upon completing registration​. Each session will expire after 31 days.​


Please note that signal strength may be weaker in certain parts of the hospital and during peak usage periods.