Nice ALS center was created by Pr Claude Desnuelle in 1992. Labeled as Reference Center in the French Rare Diseases National Plan since 2003, it is integrated in the French ALS Network since 2014 and in the EuroNMD-ERN since 2017. Included in the Neurology Department of the University Hospital of Nice, the center is totally devoted to the care of patients with ALS and other rare motor neuron diseases with specific in and out-patients facilities and dedicated team. Medical staff includes neurologist, pulmonologist and physical rehabilitation specialists with formal connections with nutritionists and palliative care teams. A multi professional team of 8 paramedical, administrative, psychologist, social worker and CRA is attached, in relation with a formal devoted local network to ensure the follow-up with residence and home-care professionals.
Main activities
Care: diagnosis and management of ALS/MND patients to last stages of the diseases, quarterly multidisciplinary follow-up, coordination of medical, paramedical, social and technical support at home.
Training: training sessions for the paramedical team, home care professionals and care givers. Program for Educational therapy for patients and demonstrations of e-technology devices for home technical assistance. Involvement in working groups of the French ALS/MND Network
Research: Clinical research with regular participation to multicenter international clinical trials and academic research projects in epidemiology, genetics or biomarkers. Specific domain centered on development of BCI as augmentative and alternative communication system in collaboration with INRIA.
| Nice ALS Centre | |
|---|---|
| Foundation year | 1992 |
| Director | Dr. Marie Hélène Soriani |
| Principal investigator | Dr. Marie Hélène Soriani |
| Contact information | |
|---|---|
| Address | Hôpital Pasteur2 – CHU de Nice |
| Contact | Dr. Marie Hélène Soriani |
| Phone | +33492035504 |
| Fax | +33492039054 |
| soriani.mh@chu-nice.fr | |
| Website | Visit the website |
Publications
- Phenotypic and genotypic studies of ALS cases in ALS-SMA families. Corcia P, Vourc’h P, Blasco H, Couratier P, Dangoumau A, Bellance R, Desnuelle C, Viader F, Pautot V, Millecamps S, Bakkouche S, Salachas F, Andres CR, Meininger V, Camu W. Amyotroph Lateral Scler Frontotemporal Degener. 2018 Aug;19(5-6):432-437. doi: 10.1080/21678421.2018.1440406. Epub 2018 Mar 1.
- Brain computer interface with the P300 speller: Usability for disabled people with amyotrophic lateral sclerosis. Guy V, Soriani MH, Bruno M, Papadopoulo T, Desnuelle C, Clerc M. Ann Phys Rehabil Med. 2018 Jan;61(1):5-11. doi: 10.1016/j.rehab.2017.09.004. Epub 2017 Oct 10
- Care management in amyotrophic lateral sclerosis. Soriani MH, Desnuelle C. Rev Neurol (Paris). 2017 May;173(5):288-299. doi: 10.1016/j.neurol.2017.03.031. Epub 2017 Apr 29. Review.
- Safety and efficacy of ozanezumab in patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled, phase 2 trial. Meininger V, Genge A, van den Berg LH, Robberecht W, Ludolph A, Chio A, Kim SH, Leigh PN, Kiernan MC, Shefner JM, Desnuelle C, Morrison KE, Petri S, Boswell D, Temple J, Mohindra R, Davies M, Bullman J, Rees P, Lavrov A; NOG112264 Study Group. Lancet Neurol. 2017 Mar;16(3):208-216. doi: 10.1016/S1474-4422(16)30399-4. Epub 2017 Jan 28
- Early diaphragm pacing in patients with amyotrophic lateral sclerosis (RespiStimALS): a randomised controlled triple-blind trial. Gonzalez-Bermejo J, Morélot-Panzini C, Tanguy ML, Meininger V, Pradat PF, Lenglet T, Bruneteau G, Forestier NL, Couratier P, Guy N, Desnuelle C, Prigent H, Perrin C, Attali V, Fargeot C, Nierat MC, Royer C, Ménégaux F, Salachas F, Similowski T. Lancet Neurol. 2016 Nov;15(12):1217-1227. doi: 10.1016/S1474-4422(16)30233-2. Epub 2016 Oct 11
Restricted information
| Serving population | |
|---|---|
| Serving population | 1.5 million people |
| Patient resources | |
|---|---|
| Population based register | Yes |
| Clinic based register | Yes |
| Geographically matched controls | No |
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 | No |
| Neuro pathology | No |
| Genomics | No |
| Transcriptomics | No |
| Metabolomics | No |
Clinical Trials - Industry sponsored
| Name | Type | Patients |
|---|---|---|
| REFALS: Effects of oral levosimendan (ODM-109) on respiratory function in patients with ALS | ||
| REFALS-ES: Effects of oral levosimendan (odm-109) on respiratory function in Patients with ALS | Open-label extension for patients completing study 3119002 | |
| (Pending) MT-1186-A01: A Phase 3, Multi-center, Open-label, Safety Study of MT-1186 Administered over 48 Weeks in Subjects with Amyotrophic Lateral Sclerosis (ALS) | ||
| (Pending) ALXN1210-ALS-308: Protocol Title : A Phase 3, Double-Blind, Randomized, Placebo-Controlled, Parallel Group, Multicenter Study to Evaluate the Efficacy and Safety of Ravulizumab in Patients with Amyotrophic Lateral Sclerosis | ||
| (Pending) AB19001: A prospective, multicenter, randomised, double-blind, placebo-controlled, parallel groups, phase 3 study to compare the efficacy and safety of masitinib in combination with Riluzole versus placebo in combination with Riluzole in the treatment of patients suffering from Amyotrophic Lateral Sclerosis (ALS) |
Clinical Trials - Investigator initiated
| Name | Type | Patients |
|---|---|---|
| MIROCALS: Efficacy and safety of low‐dose IL‐2 (ld‐IL‐2) as a Treg enhancer for controlling neuro‐inflammation in newly diagnosed Amyotrophic Lateral Sclerosis (ALS) patients: A randomised, double‐blind, placebo‐ controlled, phase‐II Proof of Concept/ Proof of Mechanism Clinical Trial | ||
| FAIR-ALS-II : Chélation conservatrice du fer comme stratégie thérapeutique susceptible de ralentir la progression de la sclérose latérale amyotrophique | ||
| NUTRALS: Impact on functional status of early oral nutritional supplementation (ONS) in amyotrophic lateral sclerosis (ALS) patients | ||
| (Pending) ROCK-ALS: Trial protocol of a randomized, controlled phase IIa trial of safety, tolerability and efficacy of the ROCK inhibitor fasudil in patients with Amyotrophic Lateral Sclerosis |