Patient registry information
The following is the current list of Alport Syndrome patient registries. If you wish to add further information to this list please email workshops@alportsyndromealliance.org.
| Country | Registry name | Contact |
|---|---|---|
| Australia and worldwide | LOVD COL4A5 COL4A3 and COL4A4 | Judy Savige |
| Canada | Julian Midgley | |
| China | Registration database of hereditary kidney diseases in children | Yanqin Zhang |
| Croatia | Patient registry of research project “Genotype-Phenotype correlation in Alport’s syndrome and Thin Glomerular Basement Membrane Nephropathy” | Petar Šenjug |
| France | EURBIO-ALPORT | Bertrand Knebelmann |
| Germany | European Alport Therapy Registry | Oliver Gross |
| Israel | Idit Maya | |
| Italy | Registro Italiano Sindrome di Alport | Alessandra Renieri |
| Japan | Alport syndrome registry | Kandai Nozu |
| Lithuania | BioAlport (Local registry, No 158200-16-857-367) | Agne Cerkauskaite |
| Poland | Hereditary Nephritis Registry | Aleksandra Zurowska |
| Russia | Alport Kids | Marina Aksenova |
| Spain | Alport Registry SEN | Isabel Galan |
| UK | Garry King | RaDaR Alport Syndrome |
| USA | NKF Patient Network - Alport Syndrome |