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Euro Huntington's disease network [logo]
EHDN2016 DISEASE NETWORK REGISTRY PROJECTS LOGIN
 
 
  
News of European HD Network -
--->Nyheder
[-]Projektet
--->Sponsor
--->[+]Executive Committee
--->[+]Writing Committee Strategic ...
--->[+]Scientific and Bioethics Advis...
--->Central Coordination
--->Language Coordination
--->Fellowship Programme
--->[+]Constitution
--->[+]Voting/Nomination
--->[-]Members
--->Request
[-]Deltagerlande
--->[+]Austria
--->[+]Belgium
--->[+]Czech Republic
--->[-]Denmark
--->[+]Coordination
--->HD Associations
--->Aarhus
--->Copenhagen
--->Odense
--->[-]Finland
--->Coordination
--->HD Associations
--->Åland
--->Helsinki-HUH
--->Helsinki-Vaestoliitto
--->Kuopio
--->Oulu
--->Tampere
--->Turku-Suvituuli
--->Turku-TUH
--->[-]France
--->Coordination
--->HD Associations
--->Amiens
--->Bordeaux
--->[+]Clermont-Ferrand
--->Lille
--->[+]Rouen
--->Strasbourg
--->[-]Germany
--->Coordination
--->HD Associations
--->Standard of Care
--->Aachen
--->Berlin
--->Bochum
--->Bonn
--->Contacts
--->Dresden
--->Dinslaken
--->Düsseldorf
--->Erlangen
--->Freiburg
--->Hamburg
--->Hannover
--->HH-Heiligenhafen
--->Itzehoe
--->Marburg-Uni
--->[+]Lübeck
--->Marburg-KPP
--->Mainz
--->Munich
--->München-LMU
--->Münster
--->Rostock
--->Taufkirchen
--->Ulm
--->[+]Würzburg
--->[+]Ireland
--->[+]Italy
--->[+]Netherlands
--->[-]Norway
--->Coordination
--->HD Associations
--->Bergen
--->Oslo
--->Trondheim
--->[+]Poland
--->[+]Portugal
--->[+]Russia
--->[+]Spain
--->[+]Sweden
--->[+]Switzerland
--->[-]U.K.
--->Coordination
--->HD Associations
--->Links
--->[+]UKHDN
--->Standard of Care
--->Aberdeen
--->[+]Ayr
--->Belfast
--->Birmingham
--->[+]Blandford Forum
--->Bristol
--->Cambridge
--->Cardiff
--->Dundee
--->Edinburgh
--->Exeter
--->Fife
--->Forth Valley
--->Glasgow
--->Gloucester
--->Hull
--->Inverness
--->Launceston
--->Leeds
--->Leicester
--->Liverpool
--->London - Guy's Hospital
--->London - Hammersmith
--->London - NHNN
--->London - Royal Hospital
--->London - St. George´s
--->Manchester
--->Newcastle-Upon-Tyne
--->[+]Northampton
--->Nottingham
--->Oxford
--->[+]Plymouth
--->Poole
--->Preston
--->Reading
--->[+]Sheffield
--->Southampton
--->Stoke-on-Trent
--->Swindon
--->Wrexham
--->[+]Outside Europe
[-]Arbejdsgrupper
--->[+]Advanced HD
--->[+]Behavioural Phenotype
--->[+]Biological Modifiers
--->[+]Biomarkers
--->[+]Brain and Tissue Banking
--->[+]Cognitive Phenotype
--->[+]Environmental Modifiers
--->[+]Functional Ability
--->[+]Genetic Testing
--->[+]Genetic Modifiers
--->[-]Health Economics
--->Dates
--->[+]Meetings
--->[+]Imaging
--->[+]Juvenile HD
--->[+]Motor Phenotype
--->[+]Neuroprotective Therapy
--->[+]Physiotherapy
--->[+]Quality of Life
--->[+]Standard of Care
--->[-]Surgical Approaches
--->Dates
--->[+]Meetings
--->[+]Symptomatic Research
--->[+]Young Adults
[-]Events
--->[+]EHDN 2016
--->EHDN 2014
--->Announcement
--->Introduction
--->Registration
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->CME points
--->Sponsoring
--->Travel Information
--->Hotel Booking
--->Reimbursement
--->Social Activities
--->[+]Abstract Submission
--->Contacts
--->Feedback
--->[+]EHDN 2012
--->[+]EHDN 2010
--->[+]EHDN 2008
--->[+]EHDN 2007
--->[+]EHDN 2006
--->[+]EHDN 2005
--->[+]EHDN 2004
[-]Kommunikation
--->Contact Form
--->Chat Rooms
--->Mailinglists - public
--->Newsletter
--->Job Offers
The study Euro-HD-Registry now ready for data entry.

Technical issues

The site is delivering web pages with encryption using the SSL or TLS standard (e.g. the same standard commonly used for online banking). This is recognized by an URL starting with https instead of http and involves the following three advantages:

  • You can be sure that you are talking to the right server. This means that you are transmitting data to and from the actual Euro-HD-Network server.
  • In combination with your password, the Euro-HD-Network server knows that you are the person that you claim to be (except if somebody else knows your password, which should not be the case!)
  • The data entered or viewed by you is transmitted in an encyrpted manner. No one is able to spy on, tamper or track this information.
The pseudonymisation function is not case-sensitive . To ensure the creation of equal pseudonyms for identical persons, please take care with the completeness und correctness of the entered data. Always use respective language-specifc characters like ñõüéßçÖÜ in their names.

It is possible to submit and store incomplete data and modify it as often as you want. All modifications are stored in a so-called audit trail. However, incomplete forms or forms with implausible data cannot be electronically signed and therefore integrated into the monitoring process or intermediate evaluations. It is not possible to delete total patients or visits. If you accidentally create a patient with the wrong pseudonym or a wrong visit, get in contact with your respective language coordinator and he or she will arrange for the correction.

Content-related issues

The latest changes of the eCRF have been:
  • The form Medical History (short History) has been split into three sub forms: Demographics (short Demo), Comorbid Conditions (short Comorbid) and the remaining one with the old name.
  • The forms Demo, Comorbid and Medication are designed for ongoing data entry.
  • The Demo form has been adapted for the European population (e.g. ethnicity, education, occupation) and extended (e.g. BMI, residence). For French investigators some fields are hidden (e.g. ethnicity, occupation).
  • Free-text fields like drugs, diseases,  frequency,  occupation or self-reported ethnicity will be coded into a common terminology like WHO-DD, ICD-10 by the monitors from time to time.
  • Some form are available in your native language, others only in English. Please select your appropriate language at the top of the web page. Error messages are still only available in English but this will be translated in the near future.
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