Registry by the Numbers

As of April 2019, there are 3,381 participants from over 1,750 different families enrolled in the Registry. Of those, nearly 1,000 participants have a known form of monogenic diabetes. Our Registry continues to grow thanks to referrals from healthcare providers, family, and friends. We have participants enrolled from all over the world, including representation from Switzerland, Canada, and Colombia.


Our registry has seen exponential growth since it’s launch in 2006. We will continue to partner with healthcare providers, patients, and community advocates to share information about monogenic diabetes and genetic testing.

Our participants vary in age from less than a year old to over 90 years old. Of those with a known form of monogenic diabetes, 557 identified as female and 402 identified as male.

Among Maturity Onset of Diabetes of the Young, GCK-MODY (MODY 2) remains the highest reported monogenic form of diabetes followed by HNF1A-MODY (MODY 3) and HNF4A-MODY (MODY 1). Among Neonatal diabetes, KCNJ11 is the highest reported form, followed by ABCC8.