ALS/MND Multidisciplinary Unit of Hospital del Mar

    Foundation year2014
    DirectorMiguel Angel Rubio, MD
    Principal investigatorMiguel Angel Rubio, MD

    The ALS/MND Unit of Hospital del Mar is composed of staff from two institutions, the Parc de Salut Mar (hospital from the spanish health public system) and the Miquel Valls Foundation.  This association allows an integral and complete care with homogenous and protocolized criteria, simplify the care process, improve the quality of the service provided and increase also the satisfaction of patients and caregivers.

    The multidisciplinary approach improves the work and interaction among healthcare professionals, reducing the number of hospital visits, emphasizing in improving the care and the quality of life of patients, as well as increasing the complexity of the patients according to their will (tracheostomy, enteral nutrition…). Professionals involved in the care of these patients cover different specialties: Neurology, Pneumology, Respiratory Physiotherapy, Rehabilitation, Nutritionist, Psychology, Social Work and Occupational Therapy.

    The Miquel Valls Foundation is a private, non-profit, Catalan private entity located in Catalonia that addresses the patients with ALS and their families with the fundamental objective of carrying out actions aimed at improving the quality of life of people affected by ALS and other motorneuron diseases, as well as support and help both them and their relatives. It also participates in grants for research projects on ALS and conducts psycho-social research and occupational therapy, and collaborates, fosters and supports translational research (both clinical and basic research).

    The objectives of the multidisciplinary unit can be divided into three sections:

    Assistance

    • Comprehensive assistance: both medical, social and psychological of the patient throughout the process of the disease.
    • Improve decision-making during the patient’s illness process.
    • Improve communication between the patient and the family during the whole process of the disease with the healthcare team with the use of new technologies.
    • Reduce the number of displacements of the patient to the hospital by coordinating the visits the same day with the different specialists involved in the process of the disease.
    • Coordination with out-of-hospital care by streamlining communication and information on the disease to home health care teams, family physician and palliative care.

    Training

    • Training in the management of patients with ALS/MND of physicians of the different services involved in the multidisciplinary unit, as well as of the medical students of our university.

    Research

    • Collection of clinical data throughout the process of the disease for the creation of databases.
    • Collection of skin samples from patients (and healthy controls) for research purposes.
    • Carry out clinical research projects with the aim of improving the quality of life of the patients.
    • Conduct clinical trials (usually industry sponsored) with new therapeutic targets.

    Contact Information

    AddressBarcelonaPasseig Marítim, 25-2908003 Spain

    ContactHospital del Mar

    Restricted information

    Serving population
    300.000

    Patient resources

    Population based register
    Clinic based register
    Geographically matched controls
    Number of skin samples
    10

    Banks

    Research activity

    Clinical management research
    Neuro epidemiology
    Neuro physiology
    Neuro imaging
    Neuro psychology
    Neuro pathology
    Genomics
    Transcriptomics
    Metabolomics

    Publication