Du er her: Forside

Welcome to the Nordic Database for Rare Diseases (version2)

 
Helsinki | København | Oslo | Oulu | Stockholm | Århus

Meeting May 2013 CPH

Nordic raredis meeting May 28 2013, Copenhagen

 

Background

The Nordic database for rare diseases has been developed in Denmark in accordance to the recommendation in the Danish report of rare diseases from 2001 and recommendations from a Nordic working group on cranio-facial diseases.

The Nordic Council of Ministers has supported the development of the Nordic database. Centers of rare diseases in the Nordic countries use their local version for collecting clinical data on patients with a number different rare diagnoses, hereby collecting information with can be pooled and used for research projects and bench-marking on a Nordic level.

The local Danish database has functioned officially since 2007 and has up till now collected 1400 patients with 561 different diagnoses seen at the two hospital centers for rare diseases in Denmark.

What's new

Feb 2015

Extended discharge information added to patient forms, and also search forms updated with search for discharge reason

December 2014

New project for OI added with own forms

May 2013

Download to xls and sql for own data added. Facility to import data from external national registry added.

November 2012

A few updates available: Fixed year of birth search criteria in search page, Updated protocol completeness, so more details available for each timepoint, changed layout for diagnose form selector.

April 2012

Raredis protocol system is now automatically showing detailed completeness information for patients added to the Scaphocephaly project. This new feature is part of a general ongoing upgrade of the system. A manual for the new features will be available for download from April 19th.

January 2012

Raredis has received new funding and is planning shift to an upgraded platform with more research protocols, faster performance and new ways of system integration (data transfer) with other databases. The changes will be completed before end of March 2012. The users of the system will get further information, when the actual changes take place. The changes will be done in a way, so the current forms, fields and data in the system will also be available after the upgrades.

September 2010

Raredis has been updated to new versions of the the core technologies in use. Data and users are available as in the former solution. During the coming 1-2 weeks we will  - based on user input - add better ways of understanding the protocols in use for the individual patient and also fix the bugs that we did not detect during the upgrade. We are available at nielssteenkrogh@zitelab.dk or +45 2267 3738

May 2010

RAREDIS annual report for 2009 is now available for download (download pdf here)

 

Old news

December 2009

At the last database meeting on Friday October 2nd all Nordic countries except Island had started to register in the Scaphocephaly protocol. Registrations are still possible in a paper form in case the webbased databasen is not accessible. A scientific commitee was founded. Concerning the Treacher-Collins project the Norwegian protocol for this project will be established in Raredis with similar registrations and set-up.

Next meeting will be held in Copenhagen on June 4, 2010.

Marts 2009

På det netop afholdte databasemøde i Oslo var der bred tilslutning fra de enkelte centre til det nordiske Scaphocephaly projekt.

Der foreligger nu både en papirbaseret og webbaseret adgang til registrering.

Med igangsætning af registreringen implementeres nu en fælles registreringsprotokol ligesom koncepter for patientsamtykke nu cirkuleres mellem centrene for gensidig inspiration.

Projektet har modtaget DKK 300.000 i februar 2009, hvilket muliggør fortsat udvikling af det nordiske samarbejde mellem centrene.

Næste møde holdes 2. oktober 2009 i København.

maj 2008


På det halvårlige databasemøde i København, 15.-16. maj 2008, blev afholdt en særlig "forsknings-sprint" hvor webbaserede skemaer til Nordisk Scaphocepali projekt blev aftalt og implementeret. Skemaerne har efterfølgende været testet på Rigshospitalet.

I efteråret igangsættes konkret dataindsamling for dette projekt og for Nordisk Treacher-Collins Projekt.

Næste databasemøde afholdes 26. september i København.

I 2009 afholdes forårsmøde i Oslo 27.-29. marts.

Handlinger tilknyttet webside