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Ocumel Ireland - 2019 CURE OM Symposium

An overview of Ocumel Ireland, presented at the 2019 CURE OM Symposium.

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Ocumel Ireland - 2019 CURE OM Symposium

  1. 1. IRELAND U V E A L MELANOMA Joanne Finnegan Melody Buckley Brendan Lynch 1
  2. 2. Highest incidence rate in the world? • High incidence rate In 2016 at the Royal Victoria Eye and Ear Hospital (RVEEH), Dublin, Ireland, presented the findings of the first study on the epidemiology of uveal melanoma at the Irish College of Ophthalmologists Annual Conference in Killarney, Ireland. 2012 recorded the highest incidence rate of 17.2 cases per million of population.
  3. 3. IRISH OCULAR ONCOLOGY SERVICE ESTABLISHED IN 2010 Pre 2010 except for those undergoing removal of eye all patients sent to the Liverpool, UK. Since 2010 all patients seen by Professor Noel Horgan at the RVEEH Dublin
  4. 4. Ocumel Irl May 2017 3 founding members 1 patient, 1 (spouse of patient) 1 (daughter of patient) WHY DID OcuMel Irl FORM? “how do I help keep my loved one/myelf alive for as long as possible” Meet others with UM, Lack of verbal information from health service – NO written info. Treatments for CM – no emotional support, poor surveillance, confusion re; biopsy (before and after), clarification needed re; genetics of tumor and risk
  5. 5. SUPPORTING EACHOTHER workload/projects Without exception we and our members prioritize our own health /treatment and that of our loved ones 1. Face book support page (open and closed) 2. Face book Public page 3. Individual and small group contact FACE TO FACE – Dublin 4. Website 5. Twitter ( medics, pharma, media, researchers) UK, European and American Pages advertised in particular our neighbours in OcuMel UK
  6. 6. PROJECTS - ONGOING Create awareness Hospitals – oncology and eye Depts. Irish Cancer Society Optometrists (re annual day dilation) Research Irish (University College Dublin) Europe (Institut Curie, Paris) Clinical Trials for Small European Countries - no standard treatment Oncologists each believe in their own pathway and own treatment? we inform patients about other options if possible eg, uk centres, second opinions EU members unable to access clincial trials outside own country No Irish Trials
  7. 7. PROJECTS – CONTINUED Surveillance/ treatment pathway Need standardization (Sato guidelines given) Genetics/Biopsy Open communication needed counselling Biopsy not taken pre treatment (pros and cons) options need to be discussed. Collaboration lInking in with other UM groups from finding out about research seeking collaboration within the research community Funding Charity status to be explored again
  8. 8. PROJECTS – CONTINUED Treatment Abroad scheme funding for private treatment via Europe INTER ORGANISTION example accessing IMCGP100 PATIENT ADVOCACY
  9. 9. Goals (3 – 5 years) Our Plan is to continue to advocate and support UM patients and families on a volunteer not for profit basis. To evolve as required but always keeping the patient at the centre, remaining independent and impartial, always keeping our goal of achieving the very best for the community We will always put ocumel irl first and not any one personality.