Registry by the Numbers

As of March 2021, there are over 3,900 participants from over 1,900 different families enrolled in the Registry. Of those, over 1,000 participants have a known form of monogenic diabetes. Our Registry continues to grow thanks to referrals from healthcare providers, families, and friends. We have participants enrolled from all over the world.

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 85 years old. Of those with a known form of monogenic diabetes, 693 identified as female and 482 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.