In 2016 we established the Sussex MND Care and Research Network, the 20th Care ‘Centre’ funded by the Motor Neurone Disease Association. (The first such Centre in the UK was initiated by Professor Nigel Leigh at King’s College Hospital and the Institute of Psychiatry in 1990 and funded continuously from 1995 until now.
The Sussex MND Care and Research Network model of care links local MND teams across the Region to ensure better care and to provide access to research, especially clinical trials, and clinical studies both local and multi-Centre.
The Sussex MND/ALS Research Group spans the Departments of Life Sciences (Sussex Neuroscience) at the University of Sussex, The Clinical Imaging Research Centre (CISC), The Department of Clinical Neuroscience, Brighton and Sussex Medical School, Universities of Brighton and Sussex, UK, and the Brighton and Sussex University Hospitals Trust Regional Neurosciences Centre.
Our research focuses on the causes and consequences of MND using laboratory models with a focus on molecular trafficking and axonal transport (Professor Majid Hafezparast and team); experimental medicine approaches including biomarker discovery (Professor Hafezparast, Professor Sarah Newbury, collaborating with Professor Martin Turner, University of Oxford, and others); neuroimaging (with Professor Mara Cercignani (Clinical Imaging Sciences Centre, CISC) with collaborations with Professor Daniel Alexander and colleagues, University College London and others; studies on cognition and behavioural aspects of MND; and clinical trials.
The MIROCALS (Modifying Immune Responses and Outcomes in ALS: www.mirocals.eu) study is funded by the European Union (H2020 award of €6.9M from 2015-2021; Eudract No.2015-005347-14). Professor Leigh is Chief Investigator and Co-Coordinator with the Coordinator Dr Gilbert Bensimon, Paris and CHU Nimes, France.
MIROCALS also receives funding from the Motor Neurone Disease Association, from the MyName5Doddie Foundation, and from AFM (http://www.afm-telethon.com/).
MIROCALS has completed recruitment as of November 2019 and the final analysis is scheduled for the last quarter of 2021.
Key staff in The Sussex MND Care and Research Centre
- Professor P Nigel Leigh BSc MB BS PhD FRCP FAAN FMedSci (Consultant Neurologist/Director)
- Professor Majid Hafezparast PhD (Laboratory Sciences Representative)
- Dr Basil Ridha PhD FRCP (Consultant Neurologist)
- Dr Fiona Lindsay FRCP (Consultant in Palliative Care)
- Ms Heather Hill (MND Specialist Practitioner)
- Coordinator: Ms Rachel Thomson
| Sussex MND Care and Research Network | |
|---|---|
| Foundation year | 2016 |
| Director | Professor PN Leigh |
| Principal investigator | Professor PN Leigh |
| Contact information | |
|---|---|
| Address | Neurology Research Group, Trafford Centre for Biomedical Research Network Coordinator: Ms Rachel Thomson (r.thomson@bsms.ac.uk) |
| Phone | +44 (0)1273 876768 (PA, Ms Pat Butler) |
| p.leigh@bsms.ac.uk | |
| Website | Visit the website |
Publications
- van Eijk RPA, Nikolakopoulos S, Roes KCB, Middelkoop BM, Ferguson TA, Shaw PJ, Leigh PN, Al-Chalabi A, Eijkemans MJC, van den Berg LH. Critical design considerations for time-to-event endpoints in amyotrophic lateral sclerosis clinical trials. J Neurol Neurosurg Psychiatry. 2019 Jul 10. pii: jnnp-2019-320998. doi: 10.1136/jnnp-2019-320998. [Epub ahead of print] PubMed PMID: 31292200.
- Gowland A, Opie-Martin S, Scott KM, Jones AR, Mehta PR, Batts CJ, Ellis CM, Leigh PN, Shaw CE, Sreedharan J, Al-Chalabi A. Predicting the future of ALS: the impact of demographic change and potential new treatments on the prevalence of ALS in the United Kingdom, 2020-2116. Amyotroph Lateral Scler Frontotemporal Degener. 2019 May;20(3-4):264-274. doi: 10.1080/21678421.2019.1587629. Epub 2019 Apr 9. PubMed PMID: 30961394; PubMed Central PMCID: PMC6567553.
- Joilin G, Leigh PN, Newbury SF, Hafezparast M. An Overview of MicroRNAs as Biomarkers of ALS. Front Neurol. 2019 Mar 7;10:186. doi: 10.3389/fneur.2019.00186. eCollection 2019. Review. Erratum in: Front Neurol. 2019 Oct 23;10:1129. PubMed PMID: 30899244; PubMed Central PMCID: PMC6416171.
- Barritt AW, Gabel MC, Cercignani M, Leigh PN. Emerging Magnetic Resonance Imaging Techniques and Analysis Methods in Amyotrophic Lateral Sclerosis. Front Neurol. 2018 Dec 4;9:1065. doi: 10.3389/fneur.2018.01065. eCollection 2018. Review. PubMed PMID: 30564192; PubMed Central PMCID: PMC6288229.
- Broad RJ, Gabel MC, Dowell NG, Schwartzman DJ, Seth AK, Zhang H, Alexander DC, Cercignani M, Leigh PN. Neurite orientation and dispersion density imaging (NODDI) detects cortical and corticospinal tract degeneration in ALS. J Neurol Neurosurg Psychiatry. 2019 Apr;90(4):404-411. doi: 10.1136/jnnp-2018-318830. Epub 2018 Oct 25. PubMed PMID: 30361295; PubMed Central PMCID: PMC6581155
Restricted information
| Serving population | |
|---|---|
| Serving population | 1.500.0000 or more |
| Patient resources | |
|---|---|
| Population based register | Yes |
| Clinic based register | Yes |
| Geographically matched controls | Yes |
Banks
| Type | ALS Patients | Controls | Other |
|---|---|---|---|
| MICROCALS biobank since 2017 |
| Research activities | |
|---|---|
| Clinical management research | Yes |
| Neuro epidemiology | Yes |
| Neuro physiology | Yes |
| Neuro imaging | Yes |
| Neuro psychology | Yes |
| Neuro pathology | No |
| Genomics | Yes |
| Transcriptomics | Yes |
| Metabolomics | No |
Clinical Trials - Industry sponsored
| Name | Type | Patients |
|---|---|---|
| Ozanezumab in ALS | Ozanezumab in ALS | 10 |
| Levosimendan | LEVALS | 5 |
Clinical Trials - Investigator initiated
| Name | Type | Patients |
|---|---|---|
| MIROCALS (http://mirocals.eu/) | MIROCALS | |
| PNL Chief Investigator and Co-Coordinator with Dr G Bensimon, Paris and Nimes, France |