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TREAT-NMD A framework for collaboration

Dr Pauline McCormack Policy, Ethics and Life Sciences Research Centre Newcastle University. TREAT-NMD A framework for collaboration. Content. Background of network Multi level involvement Structures for involvement Problems Assuming benefits of patient involvement are known.

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TREAT-NMD A framework for collaboration

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  1. Dr Pauline McCormack Policy, Ethics and Life Sciences Research Centre Newcastle University TREAT-NMDA framework for collaboration

  2. Content • Background of network • Multi level involvement • Structures for involvement • Problems • Assuming benefits of patient involvement are known

  3. TREAT-NMD Aims • address the fragmentation currently hindering translational research for cutting edge therapies in rare neuromuscular diseases (NMD) ... • ... by establishing a common road map for the progression of cutting edge therapies from laboratory to clinic

  4. Neuromuscular field • Specific characteristics for collaboration • Rare diseases, small field • Genetic, not acquired • Often chronic, complex, fatal • Lack of therapies • Network of Excellence provides distinct rallying point, in time and place

  5. Network of Excellence • 21 partners (300 people) • 4 patient organisations • 2 ‘big players’, AFM, It Telethon • 2 umbrella organisations • EURODIS - 340 rare disease groups • ENMC - 9 NMD groups • Clinicians, researchers, industry

  6. Partners/Collaborators

  7. Multilevel Involvement- Partners • Receive funds from, and report to, EU • Help lead the network • Forefront of scientific and clinical research • Lead on patient communication • Situated in a wider ‘club of interest’

  8. Multilevel involvement- others • Collaborators • Working on specific areas of project • Members • Receive information directly from network • Outside EC • US in particular but remit for central & eastern Europe

  9. Multilevel involvement- all • Registries Oversight Committee • 33% membership • Project Ethics Council • 37% membership • Therapeutic Advisory Committee • 26% membership

  10. Problems • Overlap with patient organisation aims • Overtake those aims • Revolution versus evolution • Network with co-ordination centre • Taking the initiative • Differing aims of patient organisations • Who holds authority?

  11. Problems • Different ideas of consultation • Who represents who? • One patient consortium responsible for informing others • Good model? • Patient Voice Working Group • Consensus workshop • Inclusion of central & eastern Europe organisations

  12. Take home message “...it aims to advance diagnosis and care and develop new treatments for the benefit of patients and families ... around the world” Find different models of involvement and communication “From each according to their abilities, to each according to their need”

  13. The TREAT-NMD global community TREAT-NMD newsletter recipients TREAT-NMD members TREAT-NMD web hits TREAT-NMD care and trial sites

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