Rare Disease Registers, coming soon via RPV
11 Rare Disease Registers soon to launch
The first 11 new Rare Renal Disease Groups are listed here at rarerenal.org. Alport and HNF1b will be the first, expected to start recruiting soon. Instructions will be posted at – Admin Guide, and at rarerenal.org.
These will enable
- Clinicians to add patients to disease groups so that data on all patients with [Disease X] can be centrally collated. Everything that is in RPV will then be collected automatically. Some (as light as possible) additional info will be sought – e.g. for Alport’s, whether they’ve had a genetic test, and whether they are deaf.
- Expert groups to offer advice. Info will be posted here.
- Patients to see info about their disorder, to be contactable if research or other opportunities arise, to read better info and to develop support groups.
There is further info about the new disease groups on the RPV blog. If that doesn’t work for you, because your Trust blocks blog sites, try it at home, or just browse rarerenal.org.
This is part of the RA/BAPN Rare Kidney Disease Initiative.