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How to do your own research on causes of kidney disease?

Many people with an uncertain or new diagnosis of a rare kidney disease want to do their own research to learn more. But it is easy to get lost or confused. Stay on track by following the tips below. However, always check information you find with your kidney care team members. Online information should never replace your doctor's care or advice.

How to find credible information 

Credible information is: 

  • Reliable and trustworthy 
  • Current 
  • Accurate and science-based 
  • Relevant to you and your kidney disease 

Questions to ask about websites and other information sources 

To know if information is credible, ask these questions: 

  • Who wrote it? 
  • Look for the author. The author should be an individual or an organization. For example, "Written by Dr. John Smith" or "American Kidney Fund." 
  • Read the "About us" section of a website. Websites cost money to create and update. Think about who is paying for the website and what their goal may be. 
  • Check the website address (URL) address. It costs money to purchases URL's that match your organization name, so be suspicious of website addresses that end with letters .xyz, .buzz, .live, .fit, .tk or other strings of random letters and numbers. Instead look for these legitimate ULR address endings: 
  • .gov identifies a U.S. government agency 
  • .edu identifies an educational institution, like a school, college or university 
  • .org usually identifies nonprofit organizations (such as professional groups, scientific, medical or research societies and advocacy groups) 
  • .com identifies commercial websites (such as businesses, pharmaceutical companies and sometimes hospitals) 
  • What is the purpose of the website? 
  • Check the purpose of the website or source. Seek out websites that are trying to inform and educate. Beware of websites selling a product. 
  • What is the evidence for the claims they are making? 
  • Trust information that is based on scientific evidence and research studies, not testimonials or one person's opinion. 
  • Look for who reviewed the information or claims. Often there will be a statement that the information has been reviewed by a health professional, such as a doctor or nurse. 
  • Look for references and citations. 
  • Is it up-to-date? 
  • Find the publication date. You want the information to be from the last 5-10 years.  
  • Is it "too good to be true"? 
  • Beware of cure-alls, miracle treatments, websites or companies that claim to have a quick fix or easy cure.  
  • Search for other sources or websites with the same information. 
  • Review the other links the website links to. Even if the website links to a trustworthy source, it does not mean that the site has the other organization's endorsement or support. 

Want to learn even more about how to do your own health research? Check out the National Library of Medicine's free online tutorial on how to evaluate health information online. 

Tips for doing your own health research 

  • Check out many different websites. Do not visit just one for all your information.  
  • Notice the information that is repeated on all of them–this is often the trustworthy information!  
  • Discuss what you find with your doctor before you make any changes. 
  • Beware of testimonials or personal stories, which may be comforting, but may not be accurate. Everyone experiences health problems differently, so one person's story may not represent the common experience or yours. 
  • Protect your privacy if you decide to share personal or medical information online. 
  • Use caution with your social security number. It is safest to not share your social security number online. 
  • Share only on secure sites. Secure websites have an "s" after "http" in the start of their website address (https://) and often require that you create a username and password. 
  • Use secure passwords and two-factor identification when possible. Two-factor identification has another way to verify your identity after you enter your password. 
  • Limit what you share on social media. Do not give your address, phone number or email on social media sites. 

Resources to learn more about causes of kidney disease

Credible websites about kidney diseases of unknown causes 

Credible websites for rare kidney diseases 

  • Alagille Syndrome 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), Alagille Syndrome 
  • National Organization for Rare Disorders (NORD), Alagille Syndrome 
  • Genetic and Rare Diseases Information Center (NIH, GARD), Alagille Syndrome 
  • Genetics Home Reference, MedlinePlus, Alagille Syndrome 
  • Alport Syndrome 
  • Alport Syndrome Foundation 
  • Genetics Home Reference, MedlinePlus, Alport Syndrome 
  • National Organization for Rare Disorders (NORD), Alport Syndrome 
  • Amyloidosis 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), Amyloidosis 
  • Atypical Hemolytic Uremic Syndrome (aHUS) 
  • aHUS Foundation 
  • aHUSOURCE 
  • National Organization for Rare Disorders (NORD), Atypical Hemolytic Uremic Syndrome (aHUS) 
  • MedlinePlus (NIH), Atypical Hemolytic Uremic Syndrome 
  • Autosomal Dominant Polycystic Kidney Disease (ADPKD) 
  • Polycystic Kidney Disease Foundation 
  • Autosomal Recessive Polycystic Kidney Disease (ARPKD) 
  • Polycystic Kidney Disease Foundation 
  • Cystinosis 
  • Cystinosis Research Foundation  
  • Fabry Disease 
  • Discover Fabry 
  • Focal Segmental Glomerulosclerosis (FSGS) 
  • University of Northern Carolina Kidney Center, Focal Segmental Glomerulosclerosis (FSGS) 
  • Nephcure Kidney International, Focal Segmental Glomerulosclerosis (FSGS) 
  • Goodpasture Syndrome or Anti-Glomerular Basement Syndrome 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), Goodpasture Syndrome 
  • MedlinePlus, Anti-glomerular Basement Syndrome (anti-GBM Disease) 
  • Hemolytic Uremic Syndrome (HUS) 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH), Hemolytic Uremic Syndrome (HUS) in Children 
  • Genetic and Rare Diseases Information Center (NIH), Hemolytic Uremic Syndrome (HUS) 
  • Henoch Schönlein purpura 
  • Vasculitis Foundation 
  • The Johns Hopkins Vasculitis Center , Henoch Schönlein purpura 
  • National Organization for Rare Disorders (NORD), Henoch Schönlein purpura 
  • IgA Nephropathy (Berger's Disease) 
  • National Organization for Rare Disorders (NORD), IgA Nephropathy 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), IgA Nephropathy 
  • Genetic and Rare Diseases Information Center (NIH-GARD), IgA Nephropathy 
  • Interstitial cystitis 
  • US Centers for Disease Control (CDC), Interstitial Cystitis 
  • Interstitial Cystitis Association 
  • Genetic and Rare Diseases Information Center (NIH-GARD), NIH-GARD, Interstitial Cystitis 
  • Minimal change disease 
  • Genetic and Rare Diseases Information Center (NIH-GARD), Minimal change disease 
  • University of North Carolina Kidney Center, Minimal change disease 
  • Nephrotic Syndrome 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), Neprhotic Syndrome in Adults 
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIH, NIDDK), Nephrotic Syndrome in Children 
  • Nephcure Kidney International, Nephrotic Syndrome 
  • Thrombotic Thrombocytopenic Purpura  
  • National Heart, Blood and Lung Institute (NIH), Thrombotic Thrombocytopenic Purpura 
  • National Organization for Rare Disorders (NORD), Thrombotic Thrombocytopenic Purpura  
  • Granulomatosis with polyangiitis (PGA) 
  • The Johns Hopkins Vasculitis Center, Granulomatosis with polyangiitis  
  • The Mayo Clinic, Granulomatosis with polyangiitis  
  • MedlinePlus, NIH, Granulomatosis with polyangiitis  
  • Primary hyperoxaluria (PH) 
  • Genetics Home Reference, MedlinePlus, Primary hyperoxaluria 
  • The Oxalosis & Hyperoxaluria Foundation (OHF), Primary hyperoxaluria 
  • Alnylam Pharmaceuticals' TakeOnPH1 website, Primary hyperoxaluria 
  • Healthwell Foundation, Hyperoxaluria Fund, Assistance with the prescription drugs and biologics used in the treatment and management of Hyperoxaluria.