Initiatives at Nordic level for rare disease patient registries · 2018-01-22 · Users interface • Registration of patients with rare diseases – Data forms (basic data, exams,

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