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SEPTEMBER 2023

20 SEPTEMBER 2023 
A NEW ARTICLE ABOUT THE OBSERV-AHC STUDY METHODOLOGY HAS BEEN PUBLISHED IN THE JOURNAL OF CHILD NEUROLOGY

After the article about the Event Calendar and E-Diary sub-project published on the European Journal of Pediatric Neurology, another great article has just been published on the Journal of Child Neurology about the OBSERV-AHC Study, the natural history and therapy study on AHC.
The article describes the procedures developed for a multicenter prospective data collection that can be used in future controlled trials for AHC and potentially for many other rare neurodevelopmental diseases.
Many thanks and congratulations to all the IAHCRC centers that are participating in the OBSERV-AHC Study, a milestone for the progress of research on AHC to the final step of a therapeutical trial for an effective treatment.
Many heartfelt thanks to all the patient associations that are supporting the OBSERV-AHC Study, as well as the IAHCRC-CLOUD Platform hosting the centralized OBSERV-AHC Study Database.
This article about the OBSERV-AHC methodology is available at this link.

             

OCTOBER 2022

19 - 21 OCTOBER 2022 
A SUCCESSFUL 10TH ANNIVERSARY AHC MEETING AND ATP1A3 IN DISEASE SYMPOSIUM TOOK PLACE IN EDINBURGH AND ONLINE

The 10th anniversary AHC meeting and Symposium on ATP1A3 in Disease took place last October 19 - 21, in Edinburgh and online.
Many heartfelt thanks to all the Organizing Committee and in particular to the Association AHC UK - Alternating Hemiplegia of Childhood UK and its vice-president, Dr. Katherine Behl, for this memorable event!
It was full of great news about the progress of research on AHC and all the ATP1A3-related diseases, with also many new ideas and call to actions for a better healthcare and a better quality of life for all patients and their families.

             

DECEMBER 2021

22 December 2021 
THE INFORMATION LEAFLETS AND THE PATIENT JOURNEY FOR AHC HAVE BEEN PUBLISHED ON THE EPICARE WEBSITE

The news of the publication of the leaflet and patient journey for AHC has been included in the newsletter of EpiCARE-ERN, the European Reference Network for Rare and Complex Epilepsies.
The information leaflet, for healthcare professionals and for patients and caregivers, and the patient journey are developed for each rare and complex epilepsy represented in the network, as a joint project of the experts and managers of EpiCARE-ERN together with the patient advocates of the ePAG group.
We thank them all for creating such great and useful documents to raise awareness on AHC and develop a better healthcare for all patients!
Many thanks in particular to our Data Manager Dr. Rosaria Vavassori and Katherine Behl, vice-president of AHC UK - Alternating Hemiplegia of Childhood UK for writing the text, and to Dr. Eleni Panagiotakaki and Dr. Maria Papadopoulou, at the University Hospital of Lyon, France for their scientific review.

The information leaflet and the patient journey for AHC can be downloaded from the EpiCARE website at this link link

 

OCTOBER 2020

12 OCTOBER 2020 
AN ARTICLE ON AHC PUBLISHED IN RARE REVOLUTION MAGAZINE  

Read the article on AHC published in the Autumn 2020 edition of Rare Revolution Magazine entirely dedicated to rare and complex epilepsies.
Written by Rosaria Vavassori, our Data Manager, and Katherine Behl, vice-president of AHC-UK, the AHC patient association in Great Britain; both their children are affected by AHC.
https://bit.ly/3jQI4Wr

             

NOVEMBER 2019

30 November 2019 
DATA COLLECTION STARTED FOR THE IAHCRC INTERNATIONAL STUDY OBSERV-AHC

Data collection for the OBSERV-AHC Study (a Study of the IAHCRC Consortium) started last September 1st, in Spain, France, UK and USA, supported by their national patient associations. In Italy, they are still waiting for the approval of their Ethics Committee, but they too are ready to start as soon as they obtain it.
Data will be collected and entered in the IAHCRC-CLOUD Platform by the data-entry clinicians during the neurological visits to the patients organized in collaboration with their supporting patient associations.
The caregivers of the enrolled patients are offered the possibility to record their AHC episodes directly in the IAHCRC-CLOUD Platform, through its Mobile App, so that also their data can be included in the Study.

	Prof. Mohamad Mikati presenting the OBSERV-AHC Study at the International Symposium on AHC organized by the Spanish Patient Association AESHA and the Reference Center for AHC at the San Juan de Deu Hospital in Barcelona, 9 February 2019		Prsentation of the OBSERV-AHC Study at the Family Meeting of the Italian Patient Association in Milan, March 2019
	Family Meeting for the start of the data collection for the OBSERV-AHC Study, organized by the Spanish Patient Association in Barcelona, September 2019		Family Meeting for the start of the data collection for the OBSERV-AHC Study, organized by the French Patient Association in Lyon, October 2019
	Working meeting organized on the occasion of the 8th Symposium on ATP1A3 in Disease (Reykjavik, Iceland, 3 October 2019), about the start of the data collection for the OBSERV-AHC Study. Standing, Prof. Mohamad Mikati, Scientific Coordinator of the Study; seated, the data-entry clinicians of the Centers participating in the Study, in France, Spain, Italy, UK and the United States.		The Mobile App through which a caretaker can record the patient's events in the IAHCRC-CLOUD Platform

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