Monday, May 6, 2013

New Renal Disease Registers have first recruits

The UK's new Rare Renal Disease Groups have entered a new phase with Registries for each now opening for patients across the country.  13 groups will soon be able to enrol now in a process explained at www.rarerenal.org
(staff users see bit.ly/radaradminguide)  This way, patients with rare diseases can be linked together
  • To share information with each other
  • To share their data for the benefit of understanding and research
The lead groups are starting to enrol now but soon all will be going.
You can read the full list of diseases at rarerenal.org though not all are quite ready to start.  You can also read full criteria for joining here.  Ask your consultant in or after June if you are a patient of a UK renal unit who should/could be a member of one of these groups.  Enrolment is rolling out across the UK now; not all units will be ready for you yet - but it shouldn't be long. 

This development has been undertaken jointly with RaDaR.  Joined a disease group just needs your additional permission to share your data with the Group.  An earlier post has more info. 

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