UKHCDO Advisory Committee

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1 UKHCDO Advisory Committee Dr Ri Liesner Great Ormond Street Hospital Vice Dr David Keeling Oxford University Hospitals Prof Mike Laffan Hammersmith Hospital Treasurer Dr Pratima Chowdary Great Ormond Street Hospital A representative from each Comprehensive Care Centre Basingstoke Dr Savita Rangarajan Belfast Dr Gary Benson/Dr Christine Macartney Birmingham Adults Dr Jonathan Wilde Birmingham Children s Dr Mike Williams Bristol Dr Oliver Tunstall Cambridge Dr David Perry Cardiff Dr Rachel Rayment Edinburgh Dr Julia Anderson/Prof Angela Thomas Glasgow Dr Elizabeth Chalmers/Prof R Campbell Tait Great Ormond Street Dr Ri Liesner Kent & Canterbury Dr Gillian Evans Leeds Dr Lishel Horn/Dr Michael Richards Leicester Dr Patrick Mensah Liverpool Prof Cheng Hock Toh Manchester Adults Prof Charles Hay Manchester Children s Dr Andrew Will Newcastle Dr John Hanley/Dr Kate Talks Nottingham Dr Charlotte Grimley Oxford Dr Nicola Curry Royal Free, London Dr Pratima Chowdary/Prof Amit Nathwani Royal London Sheffield Prof Mike Makris/Dr Jeanette Payne Southampton Dr Rashid Kazmi St Thomas', London Working party chairs not included above Inhibitor Working Party Dr Dan Hart Therapeutics Task Force Additional members BCSH taskforce Representing Haemophilia Centres Honorary representatives from Dublin Dr Keith Gomez Dr Tim Nokes Drs. Beatrice Nolan/Niamh O'Connell/James O'Donnell Page 1 of 8 Updated: 08 January 2016

2 Working Parties Working party rules 1. Working parties are set up for a period of three years, after that they will either be given a one year extension by the Advisory committee, lie fallow or be re-formed for a further three years. If a one year extension is granted after that they must either lie fallow or be re-formed for a further three years. 2. When a new Working Party is formed all UKHCDO members will be informed of the terms of reference and invited to nominate themselves or others to serve. 3. The UKHCDO will appoint the Working Party Chair who will agree proposed membership with him. Working party chairs should not have retired from clinical practice. 4. The Advisory Group needs to approve the terms of reference and the membership of the Working Party. 5. An individual can be on a maximum of two Working Parties (excluding the Data Management Working Party). 6. No Working Party should contain more than two Consultants from the same institution. 7. Working Parties must send a copy of all their minutes to the Advisory Group. 8. The Working Party Chairs are responsible for ensuring the procedure for UKHCDO guidelines is followed or for obtaining permission from the advisory board not to follow the procedure. Page 2 of 8 Updated: 08 January 2016

3 Data Management Working Party (continuous) Dr Ri Liesner Dr David Keeling Nancy Brodie Christina Burgess Liz Carrol Lynne Dewhurst Bartholomew Flynn Claire Foreman Emma Franklin Prof Charles Hay Dr Rob Hollingsworth Ben Palmer Jane Pearson Moore Dr Hua Xiang UK Haemophilia Data Managers Forum The Haemophilia Society CEO, The Haemophilia Society Representing Wales / Chair Therapeutics Task Force Administrator / Analyst, National Haemophilia Database Patient Representative NHS England Haemophilia Nurses Association UKHCDO Ltd & National Haemophilia Database Medical Data Solutions and Services Research Analyst Medical Statistician, NHD NHS England Research Analyst Data Miner, NHD UKHCDO Working Party Chairmen Dr Elizabeth Chalmers Paediatric Working Party Musculoskeletal Working Party Dr Dan Hart Inhibitor Working Party Prof Mike Laffan Von Willebrand Working Party Genetics Working Party UKHCDO Working Party Chairmen to send another Working Party Member as a representative if the Working Party Chair is unable to attend. Page 3 of 8 Updated: 08 January 2016

4 Haemtrack Group (Est. April 2013) Co- Nancy Brodie Dr Elizabeth Chalmers Dr Pratima Chowdary Lynne Dewhurst Prof Charles Hay Dr Rob Hollingsworth Dr Lishel Horn Clare Ibbs Dr Ri Liesner Ben Palmer Debra Pollard Antony Woolcomb Dr Hua Xiang Patient Representative (position currently vacant) Genetics Working Party (Until April 2018) Dr Nicola Curry Dr Steve Keeney Prof Michael Laffan Page 4 of 8 Updated: 08 January 2016

5 Inhibitor Working Party (until February 2017) Dr Dan Hart Dr Kate Talks Dr Trevor Baglin Dr Elizabeth Chalmers Prof Charles Hay Dr Ri Liesner Prof Mike Makris Ben Palmer Dr Savita Rangarajan Ann Riddell Dr Oliver Tunstall Dr Mike Williams Musculoskeletal Working Party (until August 2018) Dr Pratima Chowdary Mr Peter Briggs Mr Stephen Classey Dr Desmond Creagh Prof Simon Frostick Mr Nicholas Goddard Dr John Hanley Dr Angela McKernan Mr Paul McLaughlin Mrs Angela Westoby Mr Mark Wood Page 5 of 8 Updated: 08 January 2016

6 Paediatric Working Party (until October 2016) Dr Elizabeth Chalmers Dr Jeanette Payne Dr Jayanthi Alamelu Dr Mary Mathias Dr Mike Richards Dr Oliver Tunstall Dr Mike Williams Rare Bleeding Disorders Working Party This working party is fallow Von Willebrand Disease Working Party (until November 2016) Prof Mike Laffan Dr Anne Goodeve Dr David Keeling Dr Will Lester Dr Carolyn Millar Dr James O'Donnell Professor R Campbell Tait Dr Andrew Will Page 6 of 8 Updated: 08 January 2016

7 Task Forces Task Force rules 1. Task Forces are set up to complete a clearly defined piece of work such as writing a guideline. The task should usually be completed within a year. 2. The UKHCDO will appoint the Task Force Chair who will agree proposed membership with him. 3. The Advisory Group needs to approve the terms of reference and the membership of the Task Force. 4. No Task Force should contain more than two Consultants from the same institution. 5. Task Forces must report on their progress to each Advisory Group meeting. 6. Task Force Chairs are responsible for ensuring the procedure for UKHCDO guidelines is followed or for obtaining permission from the advisory board not to follow the procedure. Obstetric Task Force (Est. March 2014) Dr Sue Pavord (multidisciplinary) Dr Liz Chalmers Prof Charlie Hay Dr Will Lester Dr Bella Madan Dr Rachel Rayment Dr Tony Cumming Clinical Scientist Dr Gabriella Gray Obstetrician Dr Rezan Kadir Obstetrician Dr Nuala Lucas Anaesthetist Dr Helena Maybury Obstetrician Dr Claire Tower Obstetrician Juliette Webster Specialist midwife Page 7 of 8 Updated: 08 January 2016

8 Therapeutics Task Force (Est. April 2015) Dr Elizabeth Chalmers Dr Pratima Chowdary Dr David Keeling Dr Mary Mathias Dr James O'Donnell Dr Savita Rangarajan Dr Angela Thomas Other Committees Triennial Audit Committee David Perry Helen Brown Liz Carroll Gerry Dolan Cathy Harrison Charles Hay Tim Nokes Vicky Vidler Page 8 of 8 Updated: 08 January 2016

UKHCDO Advisory Committee

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