The CrescNet collaborative network was introduced in 1998 in the University Children’s Hospital Leipzig development with the aim of early detection of disorders of growth and weight development. The collected data are pseudonymized and sent for central analysis to the database which is maintained and administered by University of Leipzig.
I-DSD/I-CAH/I-TS (Global) connects clinical and research centres around the world allowing them to collect standardised information aimed at improving clinical practice, research and understanding of a wide range of conditions affecting sexual development and maturation. It has a network that reaches 260 centres in 63 countries on all the continents. Of these, around 115 centres from over 40 countries use the registries and have entered around 6,500 cases where information can be shared for a range of purposes that have the ultimate aim of improving the health of people with these rare conditions. Registry lead: Professor Faisal Ahmed (Glasgow)
The EClip Registry enables physicians worldwide to work together in the field of lipodystrophy. It aims to accumulate sufficient data for sound research in this area. The Registry strives for a better understanding of the cause and course of lipodystrophy by comparing the natural course of the disease and current treatment strategies as well as their outcome.
Currently, more than 25 centers are participating. Any center / physician looking after patients with lipodystrophy can apply to participate and to become an EClip Registry member.
Find out more about affiliate registries and how to become one.