Our colleagues in EuRREB have recently published their Core Registry and e-REC Annual Reports which showcase significant growth in partipation and data collection. Over the past years, the introduction of condition-specific modules has been a key driver of engagement and improving insights into rare conditions.

Core Registry highlights:

• Growing participation
  • 51 active centres are now contributing data to the Core Registry
  • 35 centres within ERNs & 16 centers outside ERNs
  • 3980 cases entered since October 2018 by 87 users
• Advancing Research and Patient Care
  • 11 Condition-specific modules developed across 6 MTGs increasing reporting for Hypothalamic & Pituitary Conditions, Bone Dysplasia, and Sex Development in 2024 compared to 2023.

e-REC highlights:

• 12 new centres and 2 new countries joined during 2024, brining the total number of centres to 113 in 32 countries.
• 56573 newcases since July 2018 from 340 users
• Hypothalamus & Pituitary (MTG6) has the highest number of reported cases in both adults and children