The International-CAH (I-CAH) network is an initiative to improve the clinical management of the rare disease Congenital Adrenal Hyperplasia. With a newly-created I-CAH Registry as its centrepiece, the initiative also focuses on providing information to patients and clinicians and developing research to optimise healthcare. The I-CAH Registry delivers a means of connecting clinical and research centres from around the world within a Virtual Research Environment (VRE) and will underpin research into new management strategies and therapies.
I-CAH seeks to support patients, children and parents by providing information, support and links, as well ...Read more
I-CAH seeks to include physicians in research to optimise the care of patients with Congenital Adrenal Hype...Read more
The I-CAH Registry is central to the I-CAH network and provides a means of connecting clinical and research...Read more
The I-CAH network is managed and administered by the I-DSD Steering Committee. The I-DSD steering committee is a group of international experts who represent patient support groups and clinicians. The committee meets periodically and is responsible for screening and delivering research proposals and maintaining and supporting the network.CONTACT
TAIN (Treatment of Adrenal Insufficiency in Neonates) is a consortium of partners funded by a European Commission Framework 7 Grant (No:281654), to develop more effective treatments for children suffering from Congenital Adrenal Hyperplasia.READ MORE
Two new studies are underway that will be supported by the newly developed longitudinal module in the I-CAH registry:
Members of I-CAH and other active users of the I-CAH/I-DSD registry met at ESPE in Barcelona on 1st October 2015. The group identified 2 studies that will be rolled out over the coming months. The group w...
A new longitudinal module has been developed in the I-CAH registry. The CAH Visits module collects data on sick day episodes, adrenal crises and treatment changes as well as more routinely collected clinic...