3rd International Preceptorship in ALS in the NEMO Clinical Centers

Objectives

The aim of this preceptorship is to share the innovative clinical vision of dedicated neuromuscular clinical centers, in the multidisciplinary treatment of Amyotrophic Lateral Sclerosis (ALS) with a selected group of health professionals dedicated to the treatment of patients with this disease.

The NEMO Centers

Clinical Neuromuscular Omnicentres (NEMO) are highly specialized clinical centers, designed to respond specifically to the needs of those patients affected by neuromuscular disorders such as ALS. The main purpose of NEMOs is to improve the quality of life of both patients and their relatives, providing them clinical support and also psychological care that meets the global needs. In Italy there are four NEMO Centers: in Arenzano, in Rome, in Milan and in Messina.

The NEMO Center in Milan

The NEMO Center in Milan was inaugurated at the end of 2007; it is located in Niguarda Ca’ Granda Hospital. The clinical activities, in-patient and out-patient care and day-hospital services are coordinated by a multidisciplinary team, who is formed by neurologists, pulmonologists, psychologists, neuromuscular specialized nurses, physiotherapists, biotechnologists, health workers among others. This center also develops clinical research and training programs in the ALS field co-ordinated by Dr. Christian Lunetta in the context of multidisciplinary care.

10 September 2018   Time: 14:00-18:30

14:00 – 14:30                     Registration and delivery of the questionnaire

14:30 – 15:00                     The NEMO Model

Valeria Sansone (Neurologist), Nemo Clinical Center Director, Milan

15:00 – 15:30                     ALS diagnosis: clinical methods and patients and caregiver approach

Christian Lunetta (Neurologist), Nemo Clinical Center, Milan

15:30 – 16:00                     Treatment initiation and symptom management

Amelia Conte (Neurologist), Nemo Clinical Center, Rome

16:00 – 16:30                     Coffee break

16:30 – 17:00                      Treatment experience with Riluzole oral suspension: adherence, safety and quality of life

Francesca Gerardi (Biotechnologist) and Andrea Lizio (Biostatistician), Nemo Clinical Center, Milan

17:00 – 17:30                     Clinical trials involvement in ALS and the NEMO Clinical Research Center

Christian Lunetta (Neurologist), Nemo Clinical Center, Milan

17:30 – 18:30                     Discussion

11 September 2018   Time: 09:00-13:30

09:00 – 10:00                     NEMO Center Infrastructure tour and presentation of survey results on ALS care and management

Christian Lunetta (Neurologist), Nemo Clinical Center, Milan

10:00 – 10:45                     The role of communication of disease (attendees will be splitted into groups):

• Diagnostic tests

Christian Lunetta (Neurologist), Nemo Clinical Center, Milan

• Genetic tests

Lorena Mosca (Geneticist), Nemo Clinical Center, Milan

• Psychological tests

Lucia Greco (Psychologist) Nemo Clinical Center, Milan

10:45 – 11:15                     Coffee break

11:15 – 12:45                     Multidisciplinary ALS patient care at NEMO center (attendees will be splitted into groups):

• Respiratory management (30’)

Elisa Falcier (Pulmonologist), Nemo Clinical Center, Milan

Elisa De Mattia (Respiratory Therapist), Nemo Clinical Center, Milan

• Nutritional Impairment and Dysphagia (30’)

Daniela Ginocchio (Otolaryngologist), Nemo Clinical Center, Milan

Marina Cattaneo (Nutritionist), Nemo Clinical Center, Milan

Michela Moretti (Speech Therapist), Nemo Clinical Center, Milan

• High Technology: improving Autonomy and Participation (30’)

Elena Carraro (Physiatrist), Nemo Clinical Center, Milan

Giordana Donvito (Occupational Therapist), Nemo Clinical Center, Milan

Stefano Becchiati (Motor Therapist), Nemo Clinical Center, Milan

12:45 – 13:10                     Discussion

13:10 – 13:30                     Conclusions

13:30                                    CME Test

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