The following resources are designed for physicians and researchers, but patients may find helpful information on the websites.
Alport syndrome Treatments and Outcomes Registry www.alportregistry.org/ The Alport syndrome Treatments and Outcomes Registry at the University of Minnesota is a voluntary international patient registry that enrolls families and patients with a history of Alport syndrome in a central registry.
American Society of Pediatric Nephrologists www.aspneph.com
The American Society of Pediatric Nephrologists is a site aimed at physician members, but also has a section for patient information and key Internet links that is quite useful.
American Society for Nephrology www.asn-online.org
The American Society of Nephrology focuses on scientific and educational goals to enhance the field of nephrology.
Center for Glomerular Disease www.glomerularcenter.org/overview.html The Center for Glomerular Diseases at Columbia University fosters the advancement and study of glomerular diseases of the kidney.
ClinicalTrials.gov www.clinicaltrials.gov/ ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
International Pediatric Nephrology Association www.ipna-online.org/ The International Pediatric Nephrology Association seeks to disseminate knowledge about kidney disease in children in the areas where care is needed most and includes nephrologists representing 89 countries.
International Society of Nephrology www.theisn.org The International Society of Nephrology is dedicated to advancing the diagnosis, treatment, and prevention of kidney disease.
GeneReviews www.ncbi.nlm.nih.gov/books/NBK1116/ GeneReviews are expert-authored, peer-reviewed disease descriptions (“chapters”) presented in a standardized format and focused on clinically relevant and medically actionable information on the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions.
National Kidney and Urologic Disease Information Clearinghouse www.kidney.niddk.nih.gov
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
PubMed http://www.ncbi.nlm.nih.gov/pubmed PubMed is a free resource that comprises over 23 million citations for biomedical literature from MEDLINE, life science journals, and online books.
Renal Physicians Association www.renalmd.org
Renal Physicians Association is engaged in the practice of medicine, teaching and research of renal diseases.