Pictures from IAHCRC on Social Media: OBSERV-AHC Study | Start of the Data Collection

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Data collection for the OBSERV-AHC Study (a Study of the IAHCRC Consortium) has just started in Spain, France, UK, and the 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.

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AHC Clinical Research in the UKAHC Clinical Research in the UK

The AHC and ATP1A3 Natural History Study  We would love to hear from you!   Alternating Hemiplegia of Childhood (AHC) is an ultra-rare disease with an estimated one in a million occurrence. Patients suffer from a combination of disabling paroxysmal events (hemiplegic or dystonic attacks and, in some cases, epileptic seizures) and varying degrees of permanent neurologic features (ataxia, dystonia, neurocognitive delay,  mental health problems). It is a disabling condition that impacts severely on the quality of life of the affected individual and their families.  About 75% of the patients have a mutation in the gene ATP1A3, in the others the cause of AHC is mostly unknown.  Curative therapies are not as yet available and the medications used to alleviate symptoms like hemiplegia, dystonia, and seizures are helpful for some, but not all patients. As long-term follow-up studies are lacking, clinicians cannot provide families with an accurate prognosis. Driven by our inability to substantially help our growing cohort of afflicted patients, and with the support of AHCUK,  the UK support group, we have set up the AHC and ATP1A3 natural history study led by Professor Helen Cross and Dr. Katerina Vezyroglou at Great Ormond Street Hospital in London.  The study aims to answer some of the unanswered questions about AHC, such as Why are different patients affected differently? Can MRI and EEG help us predict the severity of the disease? What causes AHC in patients without a ATP1A3 mutation?   All patients (children and adults) with AHC or/and with a mutation in  ATP1A3 are welcome to participate.  If you have questions or are interested to find out more, please get in touch at k.vezyroglou@ucl.ac.uk   While viewing the pdf attached

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