neuromuscular disease
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1 neuromuscular disease Ysbrand Poortman Founder/ board member VSN, Dutch Association for NeuroMuscular Diseases EAMDA, Eur. Alliance Neuromuscular Disease Associations ENMC, Eur. NeuroMuscular Center for stim. & coord. of research EPPOSI,Eur. Platform Patient Organisations, Science & Industry Vice president WANDA, World Alliance Neuromuscular Disorder Associations
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3 Holland
4 neuromuscular disease content: characteristics impact of disease healthcare services models counteractions - disability manus robot arm - social field AFM-telethon - medico scientific field european neuromuscular center (ENMC) Patients Roadmap to Treatment contributions to medicine development near future
5 neuromuscular disease Main characteristics paralysing due to mal functioning of cells in spinal cord, muscle cells or conjunction progressive, often life-threatening most are genetic (all patterns) and rare no cures (?), complex management to counteract implications of disease physio therapy, orthopedic / surgical, treatment transportation, accomodation More than 600 different neuromuscular diseases
6 neuromuscular disease Main characteristics Location defect: * spinal cord spinal muscular atrophy (post) polio poly neuropathies poly neuropathies muscle Duchenne muscular dystrophy Becker muscular dystrophy facio scapulo humeral muscular dystrophy metabolic muscular dystrophies (glycogen storage diseases; pompe) conjunction muscle & nerve myasthenia gravis Freqency/prevalence NMD: one in 150
7 neuromuscular disease HANDICAP burden of NMD SOCIAL LEVEL Arch.barriers, employment integration Physical & economical dependence Social research DISEASE / IMPAIRMENTS MEDICO SCIENTIFIC LEVEL Paralysis, respiratory & physiother.care orthopedic & surgical treatment PATIENT / FAMILY Profound disability DISABILITIES Health research PERSONAL LEVEL Adaptations / ADL; techn. aids Financial budget Relatively able Technical research
8 neuromuscular disease Healthcare services: Diagnosis: timely, accurate, multi disc. teamwork data & DNA/tissue recorded Follow up: genetic counseling timely, free & well informed choices referral to - specialised/experienced centres for treatment/rehabilitation - long term plan for living with nmd housing, availability/daily care, recreation - national association for neuromuscular diseases
9 Industry Government Science healthcare Finance Patients
10 Research & Development Government Finance Patients Science Industry Diagnostica Therapeutica QOL products
11 Model Partnership Science Patient Industry Clinician
12 Sharing Best Practices neuromuscular disease Example Contribution to independancy MANUS robot arm
13 Model: France Association Française contre les Myopathies founded in 1958 Telethon since 1987, 100 M / y 9M 12 M Fund raising Social mission s 38 M Admin. costs R&D 64 M Budget 2008: 125
14 Sharing Best Practices neuromuscular disease European Neuro Muscular Centre (ENMC) Aims: to contribute to the eradication of neuromuscular diseases to improve efficiency in European neuromuscular research to facilitate and support research communication between European (and international) researchers and clinicians
15 Sharing Best Practices neuromuscular disease Collaborative Workshops Participants Consortia 18 Publications 210 Intern. agreed diagnostic criteria 22 DMDs
16 Sharing Best Practices neuromuscular disease Epidemiological studies prevalence/incidence transition A clearing-house for clinical trials-studies EU-projects mitochondria myopathies TREAT-nmd
17 ENMC ORGANIZATION EXECUTIVE COMMITTEE Patient organizations (8 voting members) in charge of management, policy, promotion, implementation of outcome RESEARCH COMMITTEE 11 elected members in charge of all science
18 Professional backgrounds Workshops participants 2004 Basic sciences 27% Pathology Genetics 9% 4% Neurology 33% Others 11% Paediatrics 16%
19 DISSEMINATION OF KNOWLEDGE books, workshop reports, scientific papers, website, presentation and posters at international meetings
20 Beyond presentations much interaction, interactivity, and socialization leading to more collaboration
21 A few group pictures Minocycline in ALS Hypertrophy Inducing
22 European NeuroMuscular Center Multi-centre clinical trials Better networking with other centres Muscular Dystrophy Association (USA) Asian Oceanian Myology Center Integration of Eastern European countries Uniform outcome measurements, patients registries, funding and developing/emerging countries Secure funding (including through the E.U.)
23 WANDA seeks a world in which neuromuscular disorders are understood and eradicated and in which the people affected are well supported. Quadrennial assembly, 50 national NMD-ass. Support emerging/new associations
24 Objective 4: to facilitate swift dissemination of information on treatment and research findings Warnings for fake treatments: myoblast transfer, stemcell therapy in China
25 Sharing Best Practices neuromuscular disease WANDA Istanbul 2006 Patients roadmap to treatment
26 Pathways leading to therapy (1986) (2006) Internationally recognised uniform/consistent diagnostic criteria Early detection, diagnostics (an alert primary healthcare) Multi disciplinary networks of expert centres Uniform/consistent (how to set up a registry) longitudinal registration of patient data banking of patient material (DNA, tissue &)(how to set up a biobank) Understanding of pathogenesis Gene localisation, identification, gene products Availability of animal models Pharmacological research; trials, phase 1, 2, 3 (???) Encouraging regulatory system designation, authorisation, reimbursement Patient organisations as lobbyists, fighters in media & political arena, entrepreneurs!
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28 PATIENT/PARENT ORGS Helplessness Emancipation Management Drivers of healthcare Partners in medicine developm.
29 Trends in healthcare Ignorance Uncertainty Diagnosis Quality of life Management Prevention, testing/screening Timely & well informed decisionmaking re own health & off spring Personalised healthcare From disease management to health maintenance
30 From disease management to health maintenance
31 Practice Pompe s disease
32 Increasing opportunities for innovative drug development Urgent need for early detection & fast prescription of medicines Lucas Benthe (received medication at age 2 weeks) (received medication at age 9 months)
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