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PISCES Providing Individualized Services and care for Epilepsy

The PISCES project aims to establish a healthcare domain for personalized care in epilepsy, improving patient outcomes and aligning with national healthcare reforms and international initiatives on precision medicine.

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PISCES Providing Individualized Services and care for Epilepsy

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  1. PISCES Providing Individualized Services and care for Epilepsy National Epilepsy Care Programme

  2. ‘One size does not fit all’ Variability is the law of life and as no two faces are the same, so no two bodies are alike and no two individuals react alike and behave alike under the abnormal conditions which we know as disease. Sir William Osler, M.D. (1849-1919)

  3. National research Council USA Precision Medicine “the right dose of the right drug for the right indication for the right patient at the right time.”

  4. The best value care for all people with epilepsy in the right place at the right time, sharing the best information available. Summary National Epilepsy Programme

  5. Fighting one of kind disease – New Yorker Oct 23rd 2015 NGLY1 – seizures, intellectual disability, grinding, no tears

  6. A Lighthouse Project for Ireland • Based on a heritage of innovation in Irish epilepsy care domain: • Genomics • Understanding the underlying cause of epilepsy • International collaboration • National Epilepsy EPR • A socio-technical eHealth project over 10years • Designed by experts in epilepsy care • Used in 12 centres across Ireland • Health records of >6000 individuals with epilepsy • Helping improve quality and refocus limited healthcare resource

  7. Setting the Scene Sarah 5 years old • At 6 months Seizures began • 2011-2014 many clinical investigations • Parents felt powerless & guilty • 2014 Exome Sequencing • PCDH19 mutation associated with epileptic encephalopathy • Family reassured by understanding underlying cause of epilepsy • No further unnecessary investigations • Potential for Sarah’s condition to improve with age • David 36 years old • Severe ID with epilepsy • Residential care • Recent decline in cognition & behaviour • Stopped talking and communicating • 2015 –exome sequencing revealed SCN1A mutation • Informed treatment led to improved seizure control • Communication better • Family say the old David is back

  8. Epilepsy CarePISCES

  9. Project Aims • Establish The PISCES healthcare domain for patients and healthcare professionals; • Create conditions to evaluate impact of PISCES • healthcare process • Patient outcomes 3. Determine critical success factors for realizing the benefits of Personalized care for the wide system.

  10. Project Objectives

  11. Conclusion • Epilepsy Lighthouse is aligned with: • HSE reform agenda • Knowledge and Information plan • Clinical Strategy & Programmes • Economic growth of country • In keeping with emerging health policy internationally: • Precision Medicine initiative in USA • NHS Board Paper on Personalised Medicine

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