Friday September 16th, 2016
by Julie Raskin
NORD Summit, at the Gateway Marriott, Crystal City, on Thursday, October 22, 2015. John Boal Photography
Welcome to CHI!
CHI is thrilled to announce Jacqueline Kraska will be joining the CHI team as the HI Global Registry Manager on September 26. We want to extend a very warm welcome to her. By way of introduction, Jacqui has the following message to the HI community:
“Hi everyone, it is an absolute pleasure to be joining the CHI team, and I look forward to working with the community to support invaluable research and the growth of this terrific organization. A little bit about myself, I’ve spent the last 15 years working in research and development.
I have worked for the National Institute Health Research in the UK and have also overseen research and development services at a large National Health Service Trust in Devon on the coast of England. Two years ago I returned to the United States where I was raised in Connecticut and started my role at NORD, where I managed their research grants and registry program for the last two years.
In addition to my career, I have lived in Hong Kong for 5 years, travelled many areas of the world and written a novel called Agents of Movement. When I have time I continue to write, though dedicate my profession to research – especially in the rare disease space where I appreciate its unique challenges, and the drive and strength of its passionate patient community. “
The goal of the HI Global Registry is to enhance and increase interest in congenital hyperinsulinism (HI) research, advance the ability to diagnosis and treat HI and improve the quality of life of those living with HI. By putting the information from HI individuals in one powerful database, issues related to HI, such as how it presents, impacts of various treatments and other disease-related problems, become more evident. One international registry of HI patients receiving a variety of treatments around the world will create greater understanding of the disease than what many smaller collections of information could accomplish.
Using a database program developed by the National Organization for Rare Diseases (NORD), Congenital Hyperinsulinism International will launch the HI Global Registry, which will offer surveys to parents of HI children and individuals with HI about their HI experience. The answers to these surveys will be stored in a secure and private manner, with parents and individuals having the full control of what information can be seen. Surveys will include questions regarding diagnosis of their HI, treatments they have received, symptoms they have experienced, developmental assessment, diet-related issues, other relevant health information, and ability to access treatment and supplies.
The HI Global Registry Protocol and questionnaires are being developed by the Registry Steering Committee. Its members include leading international HI experts and Patient advocates.