The HI Global Registry 2020 Annual Report is now available and provides insight into the HI experience as reported by participants of the HI Global Registry (HIGR). HIGR is the first global patient-powered congenital hyperinsulinism patient registry and consists of a series of thirteen surveys made up of questions related to a patient’s HI experience over their lifetime. The analysis and descriptive statistics shared in the report are based on the responses that participants provided from HIGR’s launch in October 2018 through February 2020. This includes individuals living in 45 countries and participants ranging from just a few weeks of age to 58 years old.
COVID-19 Information for the HI Community
With the global COVID-19 pandemic transforming our everyday lives, Congenital Hyperinsulinism International (CHI) is making information available to the HI community.
We have been contacted by a number of families with concerns about how the COVID-19 pandemic could affect children with HI. We reached out to a few leading specialists to answer this question. In reading their responses, please keep in mind that the information about the virus will continue to be updated, and this information is based on what we know as of April 3, 2020.
Click here for information from leading specialists on COVID-19 and the HI Community, including a collection of resource links to more information.
CHI receives a Rare As One Network Grant
Congenital Hyperinsulinism International is thrilled and humbled to announce that we are one of 30 rare disease organizations to receive a Rare As One Network grant of $450,000, distributed over two years, from the Chan Zuckerberg Initiative. This grant will allow us to work with the patient and scientific community to create a patient-led sustainable, lasting structure to prioritize and execute an international research agenda to better understand congenital hyperinsulinism (HI), identify new ways to improve the lives of those living with HI, reduce the incidence of irreversible brain damage, detect the genetic causes of HI types not currently known; and to find cures for each and every type of HI. Over the next few months we will learn much more about the resources available to build the network. We will be in contact with our CHI family partners and the scientific and medical community about collaborating on this exciting project.
CHI HIlights: Year in Review 2019
We want to share with you how phenomenal 2019 has been for the congenital hyperinsulinism (HI) community and important news. There are so many reasons for hope and optimism. Thank you for your all you do to support the work of CHI, advancing research for better treatments and cures, raising awareness of HI to prevent brain damage and death, and being there for HI families every step of the way. Click here or on the image below to read the newsletter.
The Sweetest Cause
Click here or on the image to Donate to the #SweetestCause.
CHI receives a Global Genes Rare Patient Impact grant for RARE Innovation. Click here or on the image to read the press release about this grant award.
Highlights from the 2019 Sugar Soirée
The 2019 Sugar Soirée, which took place on the evening of November 2, was truly the “cure for the common gala.” It was a spectacular event bringing together many of CHI’s most beloved supporters in the most beautiful and fitting setting — The Mütter Museum of The College of Physicians of Philadelphia.
Click here or on the image below to see highlights from this event.
Highlights from our fall Family Conferences
Click here to read about the CHI Family Conference at ESPE 2019 in Vienna
Click here to read about the CHI CHOP Family Conference in Philadelphia.
CHI Announces HIHA Grant Award of $70,000
Glen Ridge, NJ, May 20, 2019 – Congenital Hyperinsulinism International (CHI) is thrilled to announce the award of $70,000.00 for a one-year pilot grant to Dr. Amanda Ackermann at the Children’s Hospital of Philadelphia. With this grant funding, Dr. Ackermann will create a Novel Mouse Model to Investigate Pathophysiology of Hyperinsulinism/Hyperammonemia Syndrome (HIHA). The understanding that will come from creating and studying this mouse model is needed to develop treatments for high blood ammonia levels, seizures, and neurodevelopmental differences caused by HIHA.
The grant was competitively bid internationally, and Dr. Ackermann’s project was selected after a careful review of applications by an expert review panel made up of renowned endocrinologists and family members of patients. The committee carefully evaluated the applications, which were all excellent.
“I appreciate the focus and dedication to addressing the neurological effects in patients with HIHA. As a parent with a (now adult) child with HIHA, I am passionate about finding alternative treatments for HIHA. Other therapies are needed, and I strongly feel this this researcher is acutely aware of this need.”
– Dina Tallis, EdD, Parent Reviewer of applications.
“The investigator is highly qualified, well trained and in an excellent position to accomplish this project. In my opinion, this project is very appropriate for pilot funding in that it aims at developing a new animal model for this disease that will then be made available to the entire research community for further study of all aspects of this disease. This will be a very valuable resource whose overall impact will extend far beyond this specific grant proposal.”
– Benjamin Glaser, MD, Professor Emeritus, Hadassah-Hebrew University, Expert Endocrinologist Reviewer of applications.
HI Global Registry 1st Study Report Now Available
The HI Global Registry (HIGR) is the first global patient-powered congenital hyperinsulinism (HI) patient registry. Many years in the making, HIGR launched on October 8, 2018. What follows is an initial report from the HIGR investigators including an introduction to the research project and an early glimpse of data from it. While the first annual report by investigators is not planned until early 2020, the intent of sharing these early findings is to further engage stakeholders in HIGR’s work, better inform the preparation and data analysis of the HIGR annual reporting cycle, and encourage full and robust study participation from all potential study participants. As participation grows, the pool of HI data will become increasingly more significant.
The investigators openly invite comments and questions about the report and welcome ideas for engaging all key HI stakeholders. Broad and robust participation from all members of the HI community will certainly serve to strengthen HIGR. The HIGR team can be contacted at firstname.lastname@example.org.
The HI Global Registry Has Launched
Patient-Powered Research for a Brighter Future
Press Release: Glen Ridge, NJ, October 8, 2018 – The HI Global Registry will generate new insights into congenital hyperinsulinism (HI), drive new research for treatments and cures, and support the success of clinical trials.
“The HI Global Registry is a groundbreaking new global online research study powered by patients and their families, developed by CHI with partners around the world.” – Julie Raskin, CHI Executive Director
Congenital Hyperinsulinism International (CHI) is very excited to announce today’s launch of the HI Global Registry. The HI Global Registry provides a convenient online platform for the HI patient community to share their experiences of living with congenital hyperinsulinism (HI). By participating in this study, the patient community will help themselves and researchers better understand HI to advance better treatments, a potential cure, and more timely and accurate diagnoses. (scroll down to read more, or click here for a PDF of this press release. Click on the registry logo below to go directly to the Registry).
The HI Global Registry consists of a series of surveys with questions about health, treatment, development, and quality of life. People with HI or their parents or caregivers can participate from anywhere in the world. Participants will be able to view graphic representations of the responses of the greater HI global community to see how their personal experience fits into the greater whole.
“This is an exciting day. The HI Global Registry is the first global patient registry for those affected by HI. The Registry team has brought together patient representatives from around the world to work with international researchers and clinicians on the development of the Registry and today we are live. This patient-powered project will be a vital resource to better understand HI for years to come.” – Davelyn Eaves Hood, MD, MBA
The HI Global Registry has been developed and hosted on a platform built by the National Organization for Rare Disorders (NORD), the patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
HI is a life-threatening genetic disorder that causes severe low blood sugar. In most countries the estimated incidence of HI is approximately 1/25,000 to 1/50,000 births. For those with HI the beta cells of the pancreas secrete too much insulin in an unregulated manner. Excess insulin causes hypoglycemia. Prolonged or severe hypoglycemia can cause seizures, permanent brain damage or death, if left untreated. Due to the dangers of hypoglycemia, HI requires timely diagnosis.
CHI, a 501(c)3, is a lifeline to those born with congenital hyperinsulinism (HI) and their families. CHI is the global organization dedicated to supporting children and adults born with HI. CHI is a leading source of funding for research for better treatments and cures, and the foremost advocate for increased
awareness and better medical protocols for HI to reduce preventable brain damage and death from prolonged hypoglycemia.
For more information about this topic, please visit www.congenitalhi.org/higlobalregistry or contact Tai Pasquini, CHI Research and HI Global Registry Program Director via email at email@example.com. You may also contact Davelyn Hood, HI Global Registry Principal Investigator, at firstname.lastname@example.org.
View the Be My Sugar Gallery to learn about hyperinsulinism and the children and families who live with it.
Click the image above to view our Be My Sugar campaign.
Watch our video to learn about hyperinsulinism and the children and families who live with it. The video emphasizes the importance of early diagnosis, research, and support for hyperinsulinism families.
New! CHI “What is Congenital Hyperinsulinism” Posters
Informational posters in 20 different languages, available for download and printing on our CHI Posters page.