AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |
Back to Blog
Hidata disease11/7/2022 Comparing NSS with HDR data, we found an initially high underreporting of all IBDs, and particularly for Hi. The highest mean annual incidence rate was found for IBD caused by Sp (1.74 per 100,000), followed by Nm (0.42 per 100,000) and by Hi (0.21 per 100,000). Most invasive meningococcal diseases were coded as meningitis (72.3%), while Hi and Sp were more frequently coded as septicaemia (51.6% and 60.4%, respectively). Results: Over a 10-year period, 14,243 hospital discharges with diagnosis of IBD were estimated in Italy (12,671 with specified aetiology and 1,572 with imputed aetiology). A multinomial logistic regression model was used to impute the aetiology of all discharges with a diagnosis of unspecified bacterial meningitis. Methods: Our study compared the number of cases of IBDs identified from the Italian Hospital Discharge Records (HDRs), using specific diagnostic ICD-9-CM codes, with those notified to the National Surveillance System (NSS) from 2007 to 2016. 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.Background: Vaccine-preventable invasive bacterial diseases (IBDs) caused by Neisseria meningitidis (Nm), Streptococcus pneumoniae (Sp), and Haemophilus influenzae (Hi) have been notified in Italy since 2007 without assessing reporting completeness. CHI is the global organization dedicated to supporting children and adults born with HI. Due to the dangers of hypoglycemia, HI requires timely diagnosis.ĬHI, a 501(c)3, is a lifeline to those born with congenital hyperinsulinism (HI) and their families. Prolonged or severe hypoglycemia can cause seizures, permanent brain damage or death, if left untreated. For those with HI the beta cells of the pancreas secrete too much insulin in an unregulated manner. In most countries the estimated incidence of HI is approximately 1/25,000 to 1/50,000 births. HI is a life-threatening genetic disorder that causes severe low blood sugar. The project is sponsored by Congenital Hyperinsulinism International (CHI) and governed by a group of internationally recognized HI patient advocates and experts, known as the HI Global Registry Steering Committee. The IAMRARE™ Platform was created with input from patient, caregiver, and government stakeholders to ensure a safe and user – friendly system for study participation. HIGR data is stored on the secure cloud-based IAMRARE™ Platform which was developed and is hosted by the National Organization for Rare Disorders (NORD). The investigators intend to initiate an annual reporting process with more complete study data beginning in early 2020. As participation grows, the pool of HI data will become increasingly more significant. The foundation for a HI natural history study has been established with the launch of HIGR. The early data appears to align with some known features of the disease and its community: (1) the incidence of HI is global, occurring on every continent (2) HI is not only a disease of the young (3) there are many types of HI including those from known and unknown genetic causes and (4) HI occurs together with a number of syndromes. This early glimpse into the high level data collected by HIGR between the date of its launch in October 2018 and mid-February 2019 lays the groundwork for an HI natural history study reported by those who live with the disease. The report includes an introduction to the research project and an early glimpse of data from it. Many years in the making, HIGR launched on October 8, 2018. People with HI or their parents or caregivers can participate from anywhere in the world. #Hidata disease series#It consists of a series of surveys with questions about health, treatment, development, and quality of life. HIGR is the first global patient-powered congenital hyperinsulinism (HI) patient-reported registry developed for the patient community to share their experiences of living with HI and advancing knowledge and research.
0 Comments
Read More
Leave a Reply. |