Close
People referred to Queen Square Motor Neuron Disease Centre are offered the opportunity to contribute to ongoing clinical research in MND, Kennedy’s Disease (SBMA) and other neurological conditions. Taking part in ethically approved clinical research is vital in order to:
- Further the understanding of disease mechanisms;
- Establish sensitive outcome measures to be used in future clinical trials;
- Trial the safety and effectiveness of new or existing drugs;
- Provide evidence to guide and improve care and the management of symptoms.
The decision to take part, decline an invitation to be involved or withdraw at a later time is entirely voluntary and it will not affect the care provided by the service.
For ALS/MND clinical research and trials, please contact - uclh.research.mnd@nhs.net to register your interest.
For Kennedy's Disease clinical research and trials, please contact - uclh.kdregister@nhs.net or telephone +44 (0)20 3108 7507 to register your interest.
DISEASE REGISTRIES
National disease registries collect a wealth of demographic and clinical data to provide a picture of the total and geographical frequency of a condition. That is vital to understand and plan care needs, and to evaluate the characteristics of the patient population to design clinical trials.
- MND REGISTER
Investigators: Professor Ammar Al-Chalabi, Professor Kevin Talbot, Dr Katie Sidle
Status: Recruiting
The MND Register for England, Wales and Northern Ireland
is a research database funded by the MND-Association to create a central resource of information from people living with MND, to improve care planning, and focus the knowledge and expertise of researchers in the right areas. People diagnosed with MND attending our clinical service have their demographic and clinical data stored on a secure NHS database. Data are securely transferred at regular intervals under Section 251 of the NHS Act 2006 from the MND care centre to the central database held at King’s College London.
Please consult The MND register's privacy notice for details on its aim and purpose. Those who do not wish to have their personal data stored on the MND national registry, can opt out by contacting the clinical research team at uclh.kdregister@nhs.net or Telephone +44 (0)20 3108 7507, and/or the MND Register team: Email: mndregister@kcl.ac.uk Telephone: +44 (0)207 848 5258.
Post: Maurice Wohl Clinical Neuroscience Institute, King’s College London, Department of Basic and Clinical Neuroscience, 5 Cutcombe Road, Camberwell, London SE5 9RX.
- KENNEDY'S DISEASE REGISTER
Investigators: Professor Mike Hanna, Professor Pietro Fratta
Status: Open to Recruitment
The Kennedy's Disease National Register is a research database held and managed at our centre. Its primary purpose is to facilitate research into the disorder, characterise diagnostic features, collect data on the frequency of the disease in the United Kingdom, and aid the design and recruitment in upcoming clinical trials. People on the register receive updates on conferences and progresses in the field via a newsletter.
To receive further information on how to join you can contact the clinical research team at uclh.kdregister@nhs.net or Telephone: +44 (0)20 3108 7507.
OBSERVATIONAL STUDIES / BIOMARKERS
Observational studies in MND, Kennedy’s Disease (SBMA) and other neurological conditions, collect data and samples to identify biological indicators (i.e. biomarkers) of disease. Biomarkers are measured by testing genetic and biological samples and by examining scans or other diagnostic tests. These are then compared with data about disease manifestation and progression quantified via questionnaires and physical tests. Furthermore, observational studies help highlighting changes in the quality of life of people living with neurodegenerative conditions and their families.
We welcome the contribution of family members and friends in specific research projects to provide comparative data and highlight differences between people living with a specific condition and those unaffected.
- ALS BIOMARKERS
Investigators: Professor Andrea Malaspina, Dr Richard Orrell
Status: Open to Recruitment
Characterisation of a panel of disease biomarkers in individuals with Motor Neuron Disease is a long running study that made significant contributions to the knowledge of biomarkers in MND.
The study runs at Basildon, the Bart’s and London, and UCL, and recruits people with a suspected or confirmed diagnosis of MND, Kennedy’s disease and other neurological conditions, as well as healthy volunteers. This study allows participants to provide biological samples for research using simple at-home collection kits.
If you wish to receive further information you can contact the research team uclh.research.mnd@nhs.net.
- KENNEDY'S DISEASE NATURAL HISTORY STUDY
Investigators: Professor Mike Hanna, Professor Pietro Fratta
Status: Open to Recruitment
People attending the Kennedy’s disease service are asked for their consent to contribute to further the knowledge of this rare condition. Together with the ongoing biomarker studies, participants can undertake functional assessments with the aim to stage the disease, define its progression, and validate outcome measures to be used in upcoming clinical trials.
CLINICAL TRIALS
A Clinical Trial is a scientific experiment that systematically tests the safety and effectiveness of an intervention or treatment. It is important to understand that trials are not a way to access cures that have not yet been approved by the relevant regulatory agencies. Some participants are allocated to one or more experimental treatment groups, while others receive a placebo or dummy drug/intervention. The ratio of these groups may vary from trial to trial. To access the treatment phase of a clinical trial, participants need to fulfil specific inclusion and exclusion criteria which include: the type of MND/diagnosis, the stage and speed of progression of the disease, and the presence of concomitant health conditions.
Clinical trials testing the safety and effectiveness of experimental and repurposed drugs are carried out at the The Leonard Wolfson Experimental Neurology Centre located at National Hospital for Neurology and Neurosurgery in Queen Square, part of the NIHR UCLH clinical research facilities. The MND clinical team is involved and regularly updated throughout the duration of the trial.
A comprehensive list of current treatment trials in MND conducted in the UK and in other countries can be found via the MND Association, Clinical Trials.gov, and the UK MND CSG/UK MND Research Studies webpages.
