NEWS
November 2011 THE I.B.AHC PROJECT PRESENTED AT THE INAUGURAL CONFERENCE OF ESBBThe project "I.B.AHC Biobank and Clinical Registry for Alternating Hemiplegia" has been presented at the Inaugural Conference of
ESBB - European, Middle Eastern and African Society for Biopreservation and Biobanking www.esbb.org,
that was held in Marseille, 16-19 November 2011.
February 2011 A NEW GENETIC STUDY BASED ON AN INNOVATIVE TECHNOLOGY WILL USE THE CINICAL DATA AND THE BIOLOGICAL MATERIAL KEPT IN I.B.AHCThe study "Exome Sequencing of Patients affected by Alternating Hemiplegia",
presented by Prof. Fiorella Gurrieri and Prof. Giovanni Neri of the Clinics of Medical Genetics at the University Cattolica in Rome, has
been definitively approved by the Scientific Committee and by the Board of Directors of A.I.S.EA.
January 2011 A NEW GENETIC SCREENING WILL STUDY THE SAMPLES RECEIVED FROM THE I.B.AHC BIOBANKThe study "Causative Role of mutations of the gene Protocaderine (PCDH19) (Xq22) in AHC patients", presented by Dr Nicola Specchio, Prof. Federico Vigevano, and other authors of the Neurology Division and the Unit of Biomolecular Medicine of the Scientific Institute and Child Hospital "Bambino Gesł" in Rome, has been approved by the Scientific Committee of A.I.S.EA. As soon as they are ready to start, they will receive the needed material from the I.B.AHC Biobank.
January 2011 A NEW STUDY ON THE QUALITY OF LIFE OF PATIENTS AFFECTED BY AHCThe study "Alternating Hemiplegia: a study of the paroxysmal episodes" has
been launched and will last until December 2012. The study is based on the data
collection by the patients about their daily episodes directly in the on line
I.B.AHC Clinical Registry. The Study is coordinated by A.I.S.EA Onlus and funded by A.I.S.EA and by AFHA
www.afha.org, the French Association for Alternating Hemiplegia.
September 2010 A NEW GENETIC SCREENING ON THE SAMPLES OF THE I.B.AHC BIOBANKThe study "Research of mutations in the GLUT-1 (SLC2A1) gene in the patients affected by Alternating Hemiplegia" has been presented by Pr. Federico Zara and Pr. Edvige Veneselli, of the Scientific Institute G. Gaslini in Genova, and has been approved by the Scientific Committee of A.I.S.EA Onlus. The DNA samples received from the I.B.AHC Biobank will be screened.
June 2010 THE I.B.AHC PROJECT WAS PRESENTED AT THE STAKEHOLDERS' FORUM OF THE NETWORK BBMRI - EUROPEAN BIOBANKING AND BIOMOLECULAR RESOURCES INFRASTRUCTUREOn June 9th, 2010, in Brussels, at the BBMRI
Stakeholders Forum, Filippo Franchini, on behalf of A.I.S.EA, presented
the I.B.AHC project as a "Case Study of Integration of
Biobank and Clinical Registries".
Aprile 2010 REPORT OF THE I.B.AHC VIDEO-SESSION FOR THE VALIDATION OF THE DIAGNOSISThe report of the last I.B.AHC video-session for the validation of the diagnosis, written by Dr. Elisa De Grandis, is available in the documentation area of this website. To access the documentation area, the login is necessary. In case of first access, you must register first. The video-session was held on Saturday 30 January 2010, at the Clinics of Neurology of the University "La Sapienza" in Rome. 5 new possible cases of Alternating Hemiplegia were presented and discussed by all the participating physicians, but the diagnosis of only four of them were confirmed.
December 2009 NEXT VIDEO-SESSION FOR THE VALIDATION OF THE DIAGNOSES I.B.AHCLe next Video-Session for the Validation of the Diagnoses in I.B.AHC will be held on Saturday, 30 January 2010, 13.30 - 17.30. The venue will be at the Clinics of Neurology of the University "La Sapienza" in Rome, after the closing of the Multi-Centric Meeting of the LICE - the Italian League against Epilepsy. The Video-Session will be chaired by the members of the Scientific Committee of A.I.S.EA and it is open to all the specialist treating physicians collaborating to the entering of their patients in I.B.AHC. Four new cases have already been proposed for the collegial discussion and validation: all the physicians wishing to present their new cases during the video-session, and then to collaborate to their enrollment in I.B.AHC, are kindly invited to write to info@ibahc.org as soon as possible. A.I.S.EA will be glad to offer the travel and one night stay in Rome to all the speakers presenting their new cases. Here it is the final program (in Italian).
December 2009 THE NEW I.B.AHC PROTOCOL HAS BEEN APPROVEDThe Ethic Committee of the Scientific Institute "E. Medea", hosting the I.B.AHC Biobank, approved the new protocol for I.B.AHC - Biobank and clinical Registry for AHC. The new Consent Forms for the participation of the patients and their treating physicians will be available soon in the documentation area. A.I.S.EA has also signed the new Agreement with the Director of the Institute, for the continuation of the I.B.AHC Biobank, according to the changed terms in the new protocol.
April 2009 A NEW GENETIC STUDY HAS JUST STARTED USING THE MATERIAL IN THE I.B.AHC BIOBANKThe study has been presented by Pr Fiorella Gurrieri of the University Cattolica in Rome and has been approved by the Scientific Committee of A.I.S.EA Onlus. Her request to use the DNA samples in the I.B.AHC Biobank has also been approved by the Ethic Committee of the Institute "E. Medea".
November 2008 I.B.AHC VIDEO-SESSION FOR THE VALIDATION OF THE DIAGNOSESThe yearly video-session for the diagnosis validation of the new cases to insert in I.B.AHC has been organized in Naples, 13 November 2008, joint to the National Congress of the Italian Society of Paediatric Neurology SINP (leaflet). Four cases has been presented by their treating physicians but the diagnosis for only two of them has been validated. The given presentations will be available soon in the documentation area.
October 2008 ACTIVATED THE NEW REGISTRATION FUNCTIONALITY FOR THE I.B.AHC PORTALThe registration allows to login to the documentation area of the portal, in a private space, and to download the Consent Forms for the enrolment in I.B.AHC (for patients and physicians), the forms for the usage request to I.B.AHC (for researchers) and other forms and documents regarding I.B.AHC. The documentation area will be available soon.
October 2009 THE ICF STUDY FOR ALTERNATING HEMIPLEGIA USING THE DATA IN THE I.B.AHC CLINICAL REGISTRY HAS BEEN COMPLETEDThe study analyzes the health conditions and the level of functioning and disability for a group of AHC patients, using the standard ICF classification tool developed by the World Health Organization WHO. Dr Borgatti, director of the Neuro Rehabilitation Department at the Scientific Institute E. Medea, Bosisio Parini (LC), is the coordinator of the project. The patients participating to I.B.AHC were included in this study and the access to the I.B.AHC Clinical Registry was granted to complete the neurological assessment for each participant. The results of the study will be published soon on an international publication.
August 2008 A NEW EUROPEAN GENETIC RESEARCH USES THE MATERIAL IN THE I.B.AHC BIOBANKThe request from Dr Kathleen Freson and Chris Van Geet, of the Leuven University (Belgium), to use some samples in the I.B.AHC Biobank for their genetic research on AHC has been approved. Their laboratory collaborates with the Clinical Center of the Leuven University, whose referring physician is Pr Paul Casaer, member of ENRAH, the European Network for Research on AHC.
June 2008 A NEW ITALIAN GENETIC RESEARCH HAS STARTED USING THE SAMPLES IN THE I.B.AHC BIOBANKPr Bruno Dallapiccola, director of the CSS-Mendel Institute in Rome, presented the request to use the samples in the I.B.AHC BIOBANK for a genetic research on AHC. The request has been approved by the Scientific Committee of A.I.S.EA Onlus and by the Ethic Committee of the Institute E. Medea.
March 2008 THE PROJECT "I.B.AHC on LINE" HAS STARTEDThe objectives of the project are to review the I.B.AHC protocol and to build the new on-line Clinical Registry, accessible through Internet in a secured way. The project is funded and coordinated by A.I.S.EA Onlus for a two years duration.
September 2007 THE ANALYSIS OF A NEW GROUP OF CANDIDATE GENES HAS BEEN COMPLETED IN THE DNA SAMPLES OF THE I.B.AHC BIOBANKThe research, carried out by Dr Maria Teresa Bassi at the Scientific Institute E. Medea, Bosisio Parini (LC), was funded by A.I.S.EA Onlus. The individual results of the analysis have already been communicated to the patients and entered in the I.B.AHC Clinical Registry with their consent.
May 2007 THE ANALYSIS OF A GROUP OF CANDIDATE GENES HAS BEEN COMPLETED IN THE DNA SAMPLES OF THE I.B.AHC BIOBANKThe research was realized by Drs Giorgio Casari and Filippo Martinelli Boneschi, of the DIBIT Laboratory at the Scientific Institute San Raffaele, Milan, and it is based on the clinical similarities between Alternating Hemiplegia and Hemiplegic Migraine.
March 2007 I.B.AHC VIDEO-SESSION FOR THE VALIDATION OF THE DIAGNOSESThe yearly video-session for the diagnosis validation of the new cases to insert in I.B.AHC has been organized in Rome, 24 March 2007, joint to the National Meeting of the A.I.S.EA Families and Doctors. Three cases has been presented by their treating physicians but the diagnosis for only two of them has been validated. A case of Benign Nocturnal Alternating Hemiplegia (BNAHC) has also been presented and the diagnosis has been confirmed.
March 2006 THE CLINICAL STUDY OF THE MOVEMENT DISORDERS CHARACTERISTIC FOR AHC, USING THE DATA IN THE I.B.AHC CLINICLA REGISTRY, HAS BEEN COMPLETEDThe study, realized by the Scientific Committee of A.I.S.EA Onlus, with the contribution of Dr Nardo Nardocci, Institute c. Besta - Milan, and of Pr Emilio Fernandez Alvarez, Hospital San Juan de Deu - Barcelona, is based on the analysis of the video-recordings collected in the I.B.AHC Clinical Registry. The results are yet to be published.
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