initiatives at nordic level for rare disease patient registries · 2018-01-22 · users interface...
TRANSCRIPT
Raredis
The Nordic Database for Rare Diseases
Stense Farholt & Hanne Hove
The talk today
• The Danish health organisation for rare diseases
• The database– aim
– realisation
– law
– organisation
– users interface
– advantages & disadvantages
– developer and support resources
– contact information
• Demonstration of the database
Danish National Board of Health
• 2 centres of reference for rare diseases
– diagnosis, evaluation and treatment
– genetic counselling– coordination with highly
specialised units– care in mutual obligation
with local health care– information, guidance– treatment protocols– clinical databases
• knowledge– research
• national and international
The CapitalRegion of Denmark
Inh 1,629,153
North Denmark
Region Inh. 572,507
Central Denmark Region
Inh. 1,214,679
Southern Denmark
Region Inh. 1,179,748
The SealandRegion
Inh. 801,452
Regions of Denmark
The Nordic countries
0,3 mill
5,2 mill4,6 mill
9,1 mill
5,4 mill
Aim
• Register patients with rare diseases
• Create a common Nordic research homepage– a tool for Nordic research collaboration
• Establish common Nordic treatment protocols
• Increase collaboration with patient organisations
Nordic Counsil of Ministers
2007/08: DKK 500,000
2009/10: DKK 300,000 + ?
Law
• Database approved by the Danish Data Protection Agency
• In other countries approvement according to national rules and regulations
• Handling of data security according to the acts at present
Organisation
• Coordination via a steering committee with representatives from participating centres (countries)
• Planned from 2010 –steering committee– research committee
Users interface
• Online access to the database (Firefox, Internet explorer)
• Users general interface in local language (Danish, Norwegian, Swedish, Finnish) and English
• Personal log on
• Data provided by the physician
• Admittance restricted to own centre data
Users interface
• Registration of patients with rare diseases– Data forms (basic data, exams, analyses, treatment)– Pictures, videos, X-rays, scans– Data showing
• Research database with English as standard language– Homepage for a given project agreed upon– Data forms etc.– Data showing– Admittance to share data only via the steering committee after
written agreement of the participating centres
Homepage
Nordic Database for Rare Diseases
www.raredis.eu
Advantages
• online access• open source programme, which is free• no limits for expansion• any rare disease - links ICD-10• no demanded information except when
adding a new patient– form type, name and personal security number
Advantages
• data import possible, ex. fotos, scans• data export possible, ex. into excel• output available at the moment
– growth curves, registered patients distributed accordingto diagnosis, age, and sex
• access to summary of the total number ofpatients registered in the whole database distributed according to diagnosis, age and centre
• own data → shared data (worldwide)
To be done
• Database is developing– registration started 2 years ago–design–data out-put
• Slow–change to a new server
Contact information• Hanne Hove, Rigshospitalet, Cph
– daily responsible for the database– [email protected]
• Stense Farholt, Skejby, Aarhus– co-worker, member of the steering committee– [email protected]
• Niels Steen Krogh, ZiteLab ApS– IT-consultant
• development, maintenance and support– [email protected]
Thank you