Enroll-HD is the largest international research program on Huntington's disease. The program is aimed at collecting biological data and samples from individuals who carry the genetic mutation, people at risk who do not know their genetic status, unrelated partners and, only if symptomatic, even minors. Enroll-HD is the global platform from which most of the information needed to conduct innovative therapeutic trials is drawn. A lump sum reimbursement is provided for each visit.
HDClarity is a multi-center research program for the collection of cerebrospinal fluid, with the aim of identifying biomarkers that can enable the development of new treatments for Huntington's disease. Those who already participate in Enroll-HD are entitled to join this research program. A reimbursement of 200€ per visit is provided.
Huntington in children
Huntington disease in children is very rare and quite unknown condition. To date, no specific clinical assays for minors are available: in their absence, we miss the chance to collect fundamental data to allow minors to participate in clinical trials. LIRH Foundation is currently studying paediatric HD through the observational research projects: JhUMP (Juvenile Huntington Modular Project) and 'Spazio Huntington'.
The latest is an open space for children who share a potential genetic risk of HD where they can meet and play. In the meantime, a team of specialists observe them with discretion and, only if there are sufficient conditions not to induce stress, they visit them.
This open space takes place at the LIRH Foundation headquarters, a welcoming, comfortable and non-hospitalized environment. The project is created in partnership with two of the most important Italian research hospitals: Casa Sollievo della Sofferenza and Ospedale Pediatrico Bambino Gesù.
One of the aspects that characterize Huntington's disease (HD) is the impairment of cognitive functions, including for example attention, the ability to make decisions and to recognize emotions and memory. Cognitive disorders may also occur before the onset of motor and behavioral symptoms and before the clinical diagnosis of disease. Our research projects in the cognitive area aim to identify indicators of potential cognitive decline and evaluate cognitive functions - especially executive and attentional ones - through the implementation of new methods that combine the basic knowledge of neuropsychology and cognitive neuroscience with engineering and information technology expertise. A further field of study and interest concerns brain plasticity, cognitive reserve and brain stimulation methods for diagnostic and rehabilitative purposes.
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The European EHealth Care Model for Rare Neurodegenerative Diseases is a three-year telemedicine project funded under the European JPND (Joint Programme - Neurodegenerative Disease Research) to six research centers in six different European countries: Czech Republic, Ireland, Italy, Netherlands, Germany, United Kingdom. The Foundation was chosen as a partner to represent the needs of Italian patients.
The Foundation encourages the participation of patients in therapeutic trials through preventive and ongoing information activities and through support to the families involved in the management of deadlines and obligations required by the study protocol.
LIRH research award
The Award was established with the aim of promoting Italian research into Huntington's disease. It is awarded to the study, published in the last year, whose first and last author are Italian and belong to the same center, which expressly mentions in the title Huntington's Disease and which shows potential therapeutic effects.
Maria Tassano" Research Scholarship
The "Maria Tassano" scholarship was set up on the initiative of Osvaldo Tassano in memory of his aunt Maria, who died of Huntington's disease. The initiative aims to improve the research on telemedicine for Huntington's disease.