Non-Motor Longitudinal International Study (NILS)
The main EUROPAR project is a longitudinal study in Parkinson’s (NILS: Non-motor Longitudinal International Study), a global study addressing non-motor profiling of Parkinson’s and natural history of non-motor symptoms together with treatment response and clinico-pathological correlations. This project has been adopted by the Department of Health in the UK (NIHR: National Institute of Health Research) and also supported by the Spanish ministry of education and the Biomedical Research Centre (Dementia) at King’s College.
STUDY IS OPEN
iPrognosis
Intelligent Parkinson early detection guiding novel supportive interventions (iPrognosis).
Eleven partners, academic institutions and companies, from six EU countries, led by Aristotle University of Thessaloniki, Greece, have joined forces for i-PROGNOSIS in order to provide technology-based solutions against Parkinson’s, as well as raise awareness on the disease and self-health management. The i-PROGNOSIS consortium has been established based upon the partners’ a priori shared and common vision of providing solutions to help people in need, including the Parkinson’s disease community.
For more information, visit: iPrognosis
STUDY IS OPEN
MDS-NMS
Non-motor symptoms (NMS) are present in almost every patient with Parkinson’s disease (PD) and include depression, dementia, sleep disturbances, sexual dysfunction, and pain. To accurately capture NMS, the NMS-Questionnaire and NMS-Scale were developed over a decade ago and are now used worldwide. Recently the NMS-Scale has been updated, as we now understand NMS a lot better and need to measure them more specifically. This validated, rater-administered new scale called “MDS-NMS” has been adapted to a patient completed questionnaire “MDS-NMS-Q” for use in clinical practice, which we are now aiming to validate.
With a goal to decrease in-person assessments for clinical research and clinical care, greatly accelerated by COVID-19, we will compare the in-person, rater-administered MDS-NMS with virtual (telephone [t-MDS-NMS] and video [v-MDS-NMS]) versions. This will allow the MDS-NMS to be used conveniently in-line with clinical pathways and clinical research.
We also aim to map the progression of NMS in PD, and are collecting data from people who took part in our original MDS-NMS study to gather knowledge of the progression, range and nature of NMS in PD.
STUDY IS OPEN
OpiSleep
Sleep disorders are among the commonest non-motor symptoms of Parkinson’s disease (PD). These sleep disorders include nocturnal sleep disturbances such as insomnia, sleep fragmentation, periodic limb movement, REM Sleep Behaviour disorder, and Early Morning Off (EMO). Patient can have various combinations of sleep disorders which affect the daytime alertness and thus reduce the quality of life.
Most of the time, patients may not volunteer the sleep disturbances that they are suffering and this study, through questionnaires and personal KinetiGraph recording (PKG), would enable us to identify and address this issue. In addition, we postulate that this new medication, Opicapone, a long-acting peripheral catecolamine-o-methyltransferase (COMT) inhibitor may also be able to have an effect in nocturnal sleep disturbances and EMO. Hence, this study will help us in exploring the potential role of this medication which is currently used for wearing off phenomenon.
STUDY IS OPEN
AND-PD
Parkinson’s disease (PD) is a neurodegenerative disorder resulting in progressive motor dysfunction related to loss of dopaminergic neurons in the brain. Depression and anxiety are also very common in PD. These conditions may be related to neurochemical changes in dopamine, serotonin and norepinephrine in PD, but more research is needed to confirm this. The EU-funded AND-PD project is taking a closer look at a possible link between degeneration of dopaminergic neurons in PD and co-morbid anxiety and depression. We are exploring whether RNA-based approaches targeting the dopaminergic system can relieve anxiety and depression in PD models. They will supplement these studies with the analysis of patient databases of brain images, looking for correlations of anxiety and depression markers and dopaminergic and serotonergic function.
STUDY IS OPEN
Parkinson’s Family Project
We are looking closely at the genetic make-up of people with Parkinson’s in comparison to the general population in order to find out more about which gene changes can cause Parkinson’s. It is particularly useful to study relatives with or without Parkinson’s.
Please visit https://www.parkinsons.org.uk/research/research-trials/parkinsons-family-project for more information.
STUDY IS OPEN
DNMS Questionnaire
Dystonia is a movement disorder characterised by involuntary motor manifestations with muscle contractions causing abnormal postures and often repetitive movements. Besides motor symptoms, growing evidence is emerging about the importance of non-motor symptoms (NMS) in patients with dystonia. Little is known about the presentation, the distribution and the frequency of NMS in patients with dystonia.
There are currently no validated bedside scales to characterise and measure NMS in patients with dystonia. A holistic questionnaire for pure NMS assessment in dystonia is essential for high quality epidemiological studies and clinical trials to address the burden of NMS, treatment and control of therapy of NMS in dystonia.
In this study we field test the first NMS Questionnaire specific to adult-onset primary dystonia (AOPD) – called the Dystonia NMS Questionnaire (DNMS Quest) – based on relevant responses from 150 people with AOPDs (study group) and 100 control subjects matched for age and sex (control group). Additionally, participants undergo clinical assessments such as demographic variables, clinical disease defining variables, assessment of motor severity and validated scales for specific non motor symptoms and quality of life (QOL) assessments.
STUDY IS OPEN
SYM-PD
Latest research has focused on the role of the gut in Parkinson’s disease and recent studies have shown that the intestinal microbiota can be abnormal with a deficiency of protective bacteria in people with Parkinson’s. This leads to a “leaky-gut” that can absorb harmful material from the gut to the brain via the vagus nerve (gut-brain axis) and even lead to inflammation as well as abnormal alpha-synuclein formation and deposition. Recently, in line with other disorders where gut microbiota may be abnormal, faecal transplantation has been proposed as a possible treatment strategy in Parkinson’s; however, the process is difficult and needs many regulatory approvals and safety checks. Symprove is an oral probiotic (food supplement), which unlike other commercial probiotics, can reach the lower gut and improve symptoms in gastrointestinal diseases.
From our experience at the Parkinson’s Centre of Excellence at King’s College Hospital, some people with Parkinson’s showed a considerable improvement in motor and non-motor symptoms after intake of Symprove for a variable period. We believe that the rationale behind this observation is that Symprove regulates the gut microbiota. However, to date, no studies have addressed the possible beneficial effect of Symprove in Parkinson’s. Consequently, this research project, if successful, can have a major impact on the quality of life for people with Parkinson’s. This is a world-first UK-led randomised, double-blind, placebo-controlled study comparing 60 people with Parkinson’s with constipation to either oral Symprove or placebo for 3 months.
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APOMYL
It is now widely acknowledged that PD patients suffer from several non-motor symptoms which significantly decrease their quality of life. The treatment of non-motor symptoms remains challenging and difficult. Up to 80% of patients will develop significant memory problems during the course of the disease. These memory problems are in part associated with the deposit of the protein amyloid-beta. A few studies in PD patients, as well as in rodent models, have shown that in some the level of beta-amyloid in the brain is influenced by Apomorphine (one of the advanced therapies for Parkinson’s). In PD patients, a recent post-mortem study showed that some patients treated with Apomorphine had less pronounced beta-amyloid deposition.
The APOMYL study seeks to confirm these preliminary observations by using positron emission tomography (PET) scans to study amyloid-beta deposition in PD patients who are treated with subcutaneous Apomorphine. Amyloid deposition in patients on long-term Apomorphine treatment (over one year) will be compared to patients on conventional therapy and to patients who have only recently been treated with Apomorphine. The aim is to recruit at least 20 patients on Apomorphine
treatment for the study.
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Ethnicity
Impact of ethnicity on Parkinson’s symptoms has been poorly investigated although over three million people from different ethnic minorities are living in the UK. Studies of conditions such as diabetes and heart disease as well as multiple sclerosis in communities of black African/Caribbean and South Asian subjects living in London have provided important information in relation to cause and migration in these disorders. Non motor symptoms (NMS) of Parkinson’s are present from even before diagnosis of Parkinson’s and may affect every aspect of day to day life of patients with Parkinson’s. Previous studies have suggested that the NMS profile may be different within different ethnic groups.
In the current study we expand this initial observation. The effect of ethnicity on the presentation of Parkinson’s as well as the diary habits is also evaluated/audited particularly focusing on non-motor effects, for instance effects on sleep, dribbling of saliva, fatigue, depression, pain and sexual function. This is the first study of its kind ever attempted.
STUDY HAS BEEN COMPLETED
Psychosis Scale
One of the key non-motor symptoms experienced by up to 70% of people with Parkinson’s is psychosis. Encompassing both hallucinations and delusions, psychosis has been shown to have a significantly negative impact on the quality of life and caregiver burden for people with Parkinson’s disease. Recently, the spectrum of psychosis in Parkinson’s disease characterised in extant literature is shown to differ in many ways from the usual symptoms experienced by patients suffering from schizophrenia or other known psychotic disorders.This project aims to help healthcare professionals characterise and measure both hallucinations and delusions (often called psychosis) in a more reliable way. To this end, we are seeking to develop and validate a novel psychosis severity scale, specific for people with Parkinson’s disease, which is clinician-rated and can be completed in less than 10 minutes. We hope that this project will serve as a platform for future research exploring the clinical correlations of psychosis and the effectiveness of its treatment in this specific population.
STUDY HAS BEEN COMPLETED
PKG Registry
Traditionally, Parkinson’s disease is managed by asking patients about their own experience and symptoms and using a number of questionnaires and scales, combined with the observations and clinical expertise of the professionals involved. There is a growing interest in having more objective ways of assessing symptoms so these can be better managed in clinical practice and also useful in research. The Parkinson’s KinetiGraph® or PKG is like a little wrist watch wearable device that has the ability to measure some symptoms of Parkinson’s disease in the above mentioned “real-life” settings (e.g. at home). The PKG has been incorporated in routine clinical care in an increasing number of centres worldwide and we think it helps us improve our knowledge and expertise in managing Parkinson’s disease. We use some standard and validated clinical questionnaires in combination with PKG recordings to objectively assess Parkinson’s disease patients. This will provide the clinician with a better understanding of the patient’s response to their therapies and in turn allow for better delivery of care.
CLOSED TO RECRUITMENT
