Table 5.

Relevant websites, including those for patient support groups

Web siteDescription
www.alportsyndrome.orgThis is the website of the US Alport Foundation. It is linked to the Alport Syndrome Treatments and Outcomes Registry (ASTOR) and has contact details for genetic testing laboratories worldwide and for kidney and skin immunohistochemistry in North America.
www.actionforalportscampaign.orgUnited Kingdom–based patient support group that provides information for families affected by Alport syndrome and brings together professionals with a particular interest in the condition.
www.alportregistry.orgASTOR is a voluntary international patient registry established at the University of Minnesota that aims to provide patients and families with the most current information about Alport syndrome. Information from this registry will be used to design future treatments. Orphanet is a mainly European-centric site that describes the disease classifications; lists recent medical publications; links to other relevant websites; and gives contact details for expert treating centers, diagnostic testing laboratories, patient support groups, funding groups, research projects, clinical trials and registries, biobanks and networks. curated COL4A5 mutation databases are hosted by the LOVD and ARUP Laboratories. useful and comprehensive overview of Alport syndrome from NCBI provides specific genetic information clearly described for each form of inheritance.
www.alport.deThis is a voluntary international patient registry established at the University of Goettingen, Germany. PRO-TECTThis website has information about the phase III, multicenter, randomized, double-blind, placebo-controlled trial to investigate the optimal timing of ACE inhibitor therapy and its safety in pediatric patients with early-stage disease.
  • ASTOR, Alport Syndrome Treatments and Outcomes Registry; LOVD, Leiden Open Variation Database; NCBI, National Center for Biomedical Information.