Introduction
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.
| ALS/MND Multidisciplinary Unit of Hospital del Mar | |
|---|---|
| Foundation year | 2014 |
| Director | Miguel Angel Rubio, MD |
| Principal investigator | Miguel Angel Rubio, MD |
| Contact information | |
|---|---|
| Address | Passeig Marítim, 25-29 |
| Contact | Miguel Angel Rubio, MD |
| Phone | +34932483235 |
| MARubio@parcdesalutmar.cat | |
| Website | Visit the website |
Publications
- Relevance of the pyramidal syndrome in amyotrophic lateral sclerosis. Álvarez N, Díez L, Avellaneda C, Serra M, Rubio MA. 2018 Jan-Feb;33(1):8-12. doi: 10.1016/j.nrl.2016.04.012.
- Involvement of sensory innervation in the skin of SOD1(G93A) ALS mice. Rubio MA, Herrando-Grabulosa M, Vilches JJ, Navarro X. J Peripher Nerv Syst. 2016 Jun; 21(2):88-95. doi: 10.1111/jns.12164.
- Place of death in patients with amyotrophic lateral sclerosis. Escarrabill J, Vianello A, Farrero E, Ambrosino N, Martínez Llorens J, Vitacca M. Rev Port Pneumol. 2014 Jul-Aug;20(4):188-93. doi: 10.1016/j.rppneu.2014-03-001.
Restricted information
| Serving population | |
|---|---|
| Serving population | 300.000 |
| Patient resources | |
|---|---|
| Population based register | No |
| Clinic based register | Yes |
| Geographically matched controls | No |
| Number of skin samples | 10 |
Banks
There are no banks for this centre
| Research activities | |
|---|---|
| Clinical management research | Yes |
| Neuro epidemiology | No |
| Neuro physiology | No |
| Neuro imaging | No |
| Neuro psychology | Yes |
| Neuro pathology | Yes |
| Genomics | No |
| Transcriptomics | No |
| Metabolomics | No |
Clinical Trials - Industry sponsored
| Name | Type | Patients |
|---|---|---|
| Efficacy and Safety of Masitinib in combination with riluzole in patients with ALS (AB Science). | Interventional (Clinical Trial) phase II/III | 2 |
Clinical Trials - Investigator initiated
There are no clinical trials for this centre