Research Updates

Research We Fund

The IMNDA provides funding towards research on an annual basis; we fund scientific and medical research of the highest quality specific to MND. This research is conducted by Pr Orla Hardiman and her team in Trinity College. For more information on the type of research being carried out and current research updates please click HERE

+Recent Research

Ongoing research aims to discover the cause, treatment and methods of improving quality of life for those with MND and their families.

The IMNDA funding has helped to develop multidisciplinary research on MND at the Academic Unit of Neurology at Trinity College Dublin.  It is located in a cutting-edge facility in Trinity Biomedical Sciences Institute with close links with Trinity College Institute of Neuroscience and neurology units in St James’s, Tallaght and Beaumont hospitals. It focuses on several major neurological constitions, including MND.

The MND research programme spans from early drug development to health services research, and includes projects in MND epidemiology, genetics, imaging and psychology.  Trinity researchers work closely with top teams across the world all of whom share the aim of finding new treatments.

Three innovative research projects that have been supported by IMNDA are described below.

MND AND COGNITION

Trinity MND research, and that of other groups, has now established that some people with motor neuron disease can develop difficulties with aspects of their thinking, learning and memory during the course of their illness. These difficulties may be accompanied by changes in behaviour or personality, and can present challenges for both the patients and carers.

Trinity group has been working on examining the nature and extent of these cognitive and behavioural changes.  Support from IMNDA over a period 2010 through 2013 enabled Trinity to employ a research psychologist to work on this project, under the supervision of Professor Orla Hardiman and Dr. Niall Pender, and working with Dr. Marwa Elamin, a Specialist Registrar in Neurology who has recently completed her PhD, and who hopes to continue her work as an academic neurologist with a research programme of her own in MND and cognition, based at Trinity College Dublin.

Dr. Elamin has identified different subgroups of patients with MND with different forms of thinking trouble.  She has developed some new tests that we can use to detect these changes, and she is working closely with a group in Edinburgh to build new and better ways for testing thinking in MND.   Administered during the routine clinic visit, these new tests take about 15 minutes to complete and results can be used to inform medical care while also contributing to research. A family member or carer is also asked to complete a questionnaire reporting any changes they may have noticed. These screening tests can be repeated every 3-6 months, examining patient’s progress over time. All of this work using the screening tests are administered and analysed the research psychologist funded by IMNDA.

As part of the larger MND research programme, many people with MND have helped Trinity researchers by cooperating with much longer forms of neuropsychological assessment. This assessment involves a battery of neuropsychological tests which are also designed to assess cognitive function but in greater detail. These assessments investigate areas such as language, memory and attention, are repeated every six months, and those participating also help us by allowing us to perform MRI studies and brain wave studies (EEGs) to try to correlate the neuropsychological changes with imaging and electrical changes in the brain.

This work has been recognized internationally and has led to a number of important research articles by Trinity MND research group, which in turn help us to understand MND better and to develop drugs that are targeted to the different population subgroups.

RESEARCH REGISTRAR COORDINATING A LARGE HEALTH SERVICES PROJECT ON MND CARE

International best practice recommends that palliative care should begin at the time of diagnosis of terminal illness. The aim of the palliative approach is to provide emotional, psychological and spiritual support to patients, carers and families and help maintain dignity throughout the course of illness.    But in Ireland, most patients cannot yet encounter palliative care unless they have cancer. Those with Motor Neurone disease are eligible for palliative care, but this usually does not happen until the later stages of their disease.

The IMNDA has provided funding to support a Research Registrar, Dr. Sinéad Maguire, to help coordinate a large project that will study the patient journey from the time of diagnosis until the late stages of the disease.  The large project is supported by the Health Research Board under the Interdisciplinary Capacity Building (IICE) award, and includes senior researchers in Trinity College Dublin, Dublin City University and The Hospice Foundation.   The range of skills include expertise in Health Services and Health Economics, and the inclusion of Dr. Maguire, a Neurology  Registrar with experience in MND  will help to provide the appropriate clinical focus to the work.

The main thrust of Dr. Maguire’s work includes identifying the limitations of current management of motor neurone disease by comparing existing practice with best practice guidelines; and the development of better ways to decide when and how people with motor neurone disease should access these services.

This work involves the recruitment of people with MND and their care-givers attending the national motor neurone disease clinic in Beaumont hospital, collecting information about their experience with the condition and following their journey from diagnosis to the later stages of the disease.

Dr. Maguire will seek to determine whether the person’s experience of the health system matches with best international practice, and whether the person and their carer felt that their experience of the health system provided them with  adequate care when, where and how they needed it, and if not, why not.

The project will identify situations when input from palliative care would have been useful but did not occur, and where input was perceived as not being useful.  These data will help the research group to build a new framework that can be tested by both health care professionals and those with MND and their families.   A multifaceted care framework will be piloted with health care professionals and users.  The perspective of those providing the care along with the perceived effectiveness by those with MND will be captured, and the utility of the service evaluated for a user and carer perspective. On completion, Dr. Maguire’s work will help to provide a road map for palliative service intervention for MND, and will assist in the future development and integration of palliative services in Ireland.

The research funded by IMNDA also links with a larger European project, coordinated by Professor Orla Hardiman and Dr. Maguire, and funded by the European Joint Programme in Neurodegeneration (JPND) called ALS-CarE.  The ALS-CarE Consortium comprises researchers from Ireland, England, Holland, Germany and Switzerland.

More details about the ALS-CarE programme can be found on

http://www.neurodegenerationresearch.eu/initiatives/2012-joint-transnational-calls/closed-calls/healthcare-evaluation-2012/call-results/als-care/

Combining our respective strengths will allow us to compare the Irish experience can with that of other countries, and will enable the development of a  programme of international best that can be adopted by all MND centres in Europe.

Professor Orla Hardiman, Head, Academic Unit of Neurology, Trinity College Dublin. Her main research area is MND.

Photograph A Orla Hardiman

Trinity MND research team at an IMNDA event in June 2013.

Photograph B MND Team

MND research programme is based at Trinity Biomedical Sciences Institute on Pearse Street.

ICE BUCKET CHALLENGE FUNDS MND BREAKTHROUGH

Money raised from the global fundraising phenomenon “The Ice Bucket Challenge” has helped to make a significant breakthrough in identifying a key gene linked to Motor Neurone Disease. Project MinE – which is in part funded by the Irish Motor Neurone Disease Association – has identified a new gene NEK1, which is believed to be a gene that contributes towards the illness.

It’s hoped the breakthrough will ultimately lead to an improved outcome for the 110 Irish people who will develop Motor Neurone Disease every year.  One person is diagnosed with MND every 4 days. MND is known as the 1000 day disease from diagnosis to death.

During these 1000 days someone with MND gradually loses control of their limbs ultimately resulting in a loss of independence. Every day things we take for granted like walking, talking and eating may become virtually impossible.

The Ice Bucket Challenge raised 1.6 million euro in Ireland alone. Over €600,000 went directly to research. This research, which includes Project MinE, is carried out by Prof Orla Hardiman and her team in Trinity.

The remainder of the Ice Bucket Challenge money is being spent on a variety of projects, including the funding of a third dedicated MND nurse whose job it is to help patients in their own homes.

The IMNDA remains committed to complete transparency about how the Ice Bucket Challenge money is spent, with all details published on its website www.imnda.ie

Aisling Farrell, chief executive of the IMNDA, says “this is further evidence of the tremendous good that has come from the Ice Bucket Challenge. We don’t yet know the impact it will have on patient’s lives, but it’s a breakthrough that will hopefully lead to potential treatments and one day a cure.  Again we would like to say thank you to those who drenched themselves in ice water two years ago“.

Ms Farrell continued; “This has been a challenging time for the charity sector, and while donations are down, we are eternally grateful to those who continue to donate generously to fight this awful illness. And the IMNDA and its voluntary board will continue to commit to complete transparency on how its money is spent.