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Observational clinical studies are vitally important to our understanding of the causes and natural course of movement disorders, improving care options and identifying new therapeutic targets.
If you are interested in taking part in research, please contact us at movementdisorders@ucl.ac.uk
Update regarding COVID-19
Following the COVID-19 pandemic, researchers have been working to change the way we do clinical studies and trials to adapt to the new situation. Our top priority is to ensure the safety and wellbeing of research participants. In many cases this includes efforts to reduce the number and duration of visits to the hospital for research purposes. Many studies are now offering participants the option to complete some (or all) of the research-related activities from home, via telephone, video or on-line platforms. If you are taking part in ongoing research, or wish to take part in open or future research studies, please discuss this with the respective research team.
Observational (non-drug) clinical projects are studies in which researchers collect different information about research participants but do not administer any kind of treatment or clinical intervention. Observational studies vary in duration and in the type of information they collect.
MDC researchers lead a wide range of clinical studies carried out across UCL-affiliated hospitals, including University College London Hospital (UCLH), National Hospital for Neurology and Neurosurgery at Queen Square and The Royal Free Hospital.
Please click on the study titles in the list below to get more information on each study and see whether it might be suitable for you.
If you are unsure whether or not research participation is for you, you can find more information about how research studies are conducted and what can you expect if you choose to participate at our What research participation involves webpage. You can find more information on specific tests and procedures used for clinical research on our Methods dictionary webpage.
Please note that the list of ongoing research studies is updated regularly, as some studies reach their recruitment capacity and stop enrolling new participants, and new studies open. If you would like to be notified whenever new studies which might be potentially suitable for you open for recruitment you are invited to sign up for our Research Registry.
For any general questions about participation in our clinical research studies please contact our clinical research administration team at: movementdisorders@ucl.ac.uk.
Open Studies - Recruiting Participants
qMAP-PD: Quantitative MRI for anatomical phenotyping in Parkinson's disease
Defining the microstructural basis of tremor in vivo to identify novel therapeutic targets
Upcoming Studies - Will Start Recruiting Participants Soon
Ongoing Studies - No Longer Recruiting Participants
Completed Studies
PRoBaND: Parkinson's repository of biosamples and network datasets
CUSSP: The CloudUPDRS smartphone software in Parkinson's study
Imaging neuromelanin and iron in dystonia and dystonia/Parkinsonism
Open Studies - Recruiting Participants
Vision in Parkinson’s
Why: The Vision in Parkinson’s study aims to understand the mechanisms behind thinking and memory changes in Parkinson’s. We hope this will help us to target treatments for Parkinson’s more accurately in the future. The study will look at brain changes on MRI scans in Parkinson’s disease and at proteins which build up in Parkinson’s disease. The aim is to use this information to design treatments targeted for different people, depending on the type of proteins they have.
What: The study will involve five types of brain scan at the first visit. Each scan will give us a different type of information. The scans can be done over a period of a few weeks. These scans are:
- A standard MRI scan
- A high resolution MRI scan: providing additional spatial detail about the brain.
- Two Positron emission tomography (PET) scans: to look at amyloid and tau proteins that can build up in Parkinson’s.
- A magnetoencephalography (MEG) scan: to look at brain changes in Parkinson’s that happen very quickly, in millisecond time frames.
On one of the visits we will also ask for a blood test, and you will carry out visual tasks on the computer, as well as thinking and memory tests. Volunteers will be invited back for follow-up visits after 18-months and 3 years.
Who: People with Parkinson’s or healthy people unaffected by any neurological disease aged 50 – 80 years, who are able to have an MRI scan (no pacemaker/deep brain stimulation).
More information: Vision in Parkinson’s study website
Contact: Naomi Hannaway – Research Fellow (n.hannaway@ucl.ac.uk)
qMAP-PD: Quantitative MRI for anatomical phenotyping in Parkinson’s disease
Why: Disease course and presentation for Parkinson’s can differ widely between individual patients. However, there is currently no reliable way to predict crucial clinical outcomes such as the rate of progression or response to medication. The qMAP-PD study seeks to use non-invasive brain-scanning techniques to understand why Parkinson’s disease is so variable, develop ways to predict how quickly the disease will progress based on an individual’s brain structure and diagnose the condition during the pre-clinical phase.
What: Participants will be followed-up for assessments over four years. Assessments will include an advanced MRI scan, completing of clinical scales and questionnaires evaluating Parkinsonian and other symptoms and cognitive abilities and a blood sample collection.
Who: People aged between 40 and 70 years who have been diagnosed with Parkinson’s within the last two years OR people diagnosed with REM Sleep Behaviour Disorder (RBD) OR healthy people with no diagnosed neurological conditions.
More information: qMAP-PD study page
Contact: Charlotte Dore – Study Manager (ion.qmap@ucl.ac.uk)
Parkinson’s and Movement Disorders Families Project
Why: For most people who develop Parkinson's there is no clear underlying cause. This project is particularly interested in the minority of people diagnosed with Parkinson's who have either early onset disease and/or other relatives affected with Parkinson's. As families share a common genetic background, it is much easier to find new Parkinson’s genes by studying the genetic makeup of people with Parkinson’s alongside other members of their families. The study aims to identify inherited variants in genes that cause Parkinson’s in order to understand what causes Parkinson’s and to develop new treatments.
What: Participants will provide basic demographic and health-related information as well as providing a DNA sample, collected either via blood or saliva. There is also a short follow up period that involves completing questionnaires at home.
Who: You may be eligible if you have one of the following:
- People who were diagnosed with Parkinson’s before age 45
- People who were diagnosed with Parkinson’s at any age but have other family members (blood relatives) who also have/had Parkinson’s
- Healthy people who have a blood relative diagnosed with Parkinson’s
More information: Parkinson’s Families Project on ClinicalTrials.gov
Contact: PFP Study Coordinator (ion.pdresearch@ucl.ac.uk)
PROSPECT-UK: Longitudinal UK study of progressive supranuclear palsy (PSP), cortico-basal syndrome (CBS) and multiple system atrophy (MSA)
Why: There are a group of neurodegenerative disorders which are often initially diagnosed to be Parkinson's disease, but which are biologically and clinically distinct. The three most common conditions are PSP, CBS and MSA, and unlike Parkinson’s disease, do not respond well to dopamine replacement therapy. These conditions are often referred to as atypical parkinsonian syndromes. PROSPECT-UK aims to improve methods for early diagnosis and tracking disease progression of atypical parkinsonian syndromes.
What: Participants will be invited onsite for a baseline study visit and a follow up visit one year later. Assessments will include blood sample collection and completion of clinical scales and questionnaires evaluating Parkinsonian and other symptoms and cognitive abilities. Additional optional assessments, which will be performed on a voluntary basis, will include a skin biopsy, magnetic resonance imaging (MRI) scans and lumbar puncture to collect cerebrospinal fluid (CSF) samples.
Who: People diagnosed with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Cortico-Basal syndrome (CBS) or other forms of atypical Parkinsonism. This study is also recruiting healthy volunteers as control participants.
More information: PROSPECT-UK study page on ClinicalTrials.gov
Contact: The PROSPECT study team (prospect@ucl.ac.uk)
PREDICT-PD
Why: Research suggests that problems including loss of sense of smell, sleep problems, constipation, anxiety, and depression may occur many years before the movement problems related to Parkinson's disease appear. We believe that if we can predict who is going to get Parkinson’s, we will soon have treatments for those in the early stages that could slow or prevent the condition from progressing. PREDICT-PD is a ground-breaking project using simple tests to identify people at high risk of Parkinson’s disease before the symptoms appear.
What: Study participation is done remotely via an online portal and participants will be asked to complete the study assessments once yearly over the study’s follow-up period. Participation includes the completion of a few online questionnaires that collect information on various medical and lifestyle factors that may influence risk of Parkinson’s and a keyboard tap test. Smell test and saliva DNA kits are mailed to participants to be completed at home and mailed back to the research team.
Who: Healthy people (do not have diagnosed Parkinson’s) aged 60-80 years. People with a family history of Parkinson’s are also encouraged to participate. If you believe you may be eligible, take part by visiting the PREDICT-PD website below.
More information: PREDICT-PD study website
Contact: Aneet Gill – Study Coordinator (aneet.gill@qmul.ac.uk)
AND-PD: Anxiety and Depression in Parkinson’s Disease
Why: Anxiety has been listed as the second most important issue by people with Parkinson’s, and approximately 40% also report experiencing depression. There is currently little information about how and where anxiety with or without depressive symptoms originates in patients with Parkinson’s, how to be best treat it, or why some patients with Parkinson’s are more prone to anxiety than others. We want to find out what the risk factors are for anxiety in people with Parkinson’s, and to identify the underlying biological changes associated with emotional dysfunction in the disease. The eventual aim will be to identify targets to help design therapies to improve anxiety in Parkinson’s. We also would like to see if patterns of anxiety and depression differ in people with and without Parkinson’s. AND-PD aims to see if there are structural or functional brain differences between people who have anxiety and Parkinson’s compared to those who do not have Parkinson’s.
What: Participants will attend three study visits over a 12-month period: a screening and baseline visit, follow-up at 6 months, and follow-up at 12 months. Visits will consist of a physical examination, psychological testing, and computer-based tasks. Participants may also have (optional) MRI scans to measure brain responses correlating with measures of anxiety in different regions of the brain.
Who: People diagnosed with Parkinson’s. This study is also recruiting a smaller number of age-matched controls without Parkinson’s.
More information: AND-PD study website
Contact: AND-PD study team (and-pd@ucl.ac.uk)
PD-FRONTLINE
Why: PD-Frontline is recruiting all people with Parkinson’s in the UK through a simple online registration with the aim of identifying people who carry certain genes associated with Parkinson’s disease. Many of the drugs being tested in Parkinson’s research target specific genes which we know influence the development of Parkinson’s. To test whether these drugs work, we need to identify people with abnormalities in these genes who can be enrolled in clinical trials. PD-FRONTLINE enables you to be tested for two genetic risk factors for Parkinson's, called LRRK2 and GBA.
What: Participants will complete an online registration and questionnaire to assess eligibility for the study. If you are deemed eligible, a saliva kit will be sent to you via post to provide a sample for genetic testing. If you are found not to be eligible for the saliva collection kit at this stage, you will still be able to remain in the study and may be contacted in the future to provide a sample. If you are found to carry the LRRK2 or GBA gene, we may contact you about participating in our RAPSODI study.
Who: People diagnosed with Parkinson’s disease who live in the UK.
More information: PD-FRONTLINE study website
Contact: Orla Mitchell – PD-FRONTLINE lead (pdfrontline@ucl.ac.uk)
RAPSODI: Remote assessment of Parkinsonism supporting ongoing development of interventions in Gaucher’s disease
Why: Research has shown us that we may be able to intervene many years before people develop Parkinson's and slow down disease progression. People who carry genetic alterations in the GBA gene (which can cause Gaucher disease) are at increased risk of developing Parkinson's disease, although the vast majority will not develop it. The RAPSODI study assesses carriers of GBA genetic alterations completely online for the earliest signs of Parkinson's disease.
What: Participants will be required to undertake a questionnaire and a number of interactive assessments, which are designed to identify risk factors and early clinical signs of Parkinson's. Participants will be genotyped in order to establish genetic factors which determine those who do and do not develop Parkinson’s. The answers to the questionnaires, assessments, and genotyping will be stored in a secure internet database and will generate a risk score. Blood, urine, and cerebrospinal fluid will be analysed to look for biological markers that predict the onset of Parkinson’s. Under most circumstances the study will be undertaken entirely at the participant's home, either through an internet portal or with the use of postal assessments.
Who: You may be eligible to participate if you have one of the following:
- You have been diagnosed with Gaucher’s disease
- You carry a GBA genetic alteration
- You are related to someone with Gaucher’s disease or a known GBA carrier.
If you have Parkinson's disease and don't know whether you carry a GBA genetic alteration, please visit our sister study PD-FRONTLINE.
More information: RAPSODI study website
Contact: RAPSODI study team (rapsodi@ucl.ac.uk)
Defining the microstructural basis of tremor in vivo to identify novel therapeutic targets
Why: Tremor, a shaking or trembling in part the body that cannot be controlled, is a common and disabling condition that affects many people. Common causes of tremor include Essential Tremor Syndrome (ET), Parkinson's disease (PD) and a rarer condition called dystonia. It can significantly impact day to day activities and quality of life, and is highly variable between sufferers, posing a challenge both with diagnosis and treatment. Half of all tremor patients do not respond to any of the medication currently available. In these individuals, more invasive treatments are often considered such as deep brain stimulation (DBS) or focused ultrasound, that interrupt the brain circuits that carry the abnormal tremor signals, often targeting a deep region known as ventralis intermedius nucleus of the thalamus (Vim). However, there are many other brain areas and networks involved in the generation and propagation of tremor. A better understanding of these could allow non-invasive "neuromodulation" treatments in the future, using targeted electrical stimulation to dampen the abnormal brain signals. To develop better treatments for tremor, a greater understanding of the neural circuits that underpin tremor in humans is required. This requires mapping how focal brain regions, and the connections between these, are altered in tremor sufferers, to better understand how different patterns of damage to these structures modify tremor properties such as body regions affected, severity or response to treatment.
What: This study will focus on ET and PD, the most common causes of tremor with the following objectives
- To map the changes in brain tissue associated with different tremor properties using quantitative MRI
- To map connections between regional brain changes and identify genes associated with these brain structures
- To use these maps to identify potential treatment options, using either neuromodulation or drugs, that are targeted to specific tremor subtypes/properties
Who: You have been diagnosed with Essential Tremor Syndrome or Parkinson’s disease
Contact: Dr. Amit Batla – Principal Investigator (a.batla@ucl.ac.uk)
Upcoming Studies - Will Start Recruiting Participants Soon
Matching mental health support to the needs of people affected by Parkinson's: Patient and cost benefits
Why: Parkinson’s can cause distressing mental health issues such as anxiety, depression, and memory and thinking problems. These can be caused by a combination of biological and psychological factors and be more disabling than physical symptoms, reduce quality of life and increase risk of mortality. Despite this, there are few specialist mental health professionals or psychological interventions available to help people with Parkinson’s.
What: This project will develop an effective programme of evidence-based psychological interventions for mental health issues in Parkinson’s that can be easily delivered by nonexperts. Parkinson’s mental health specialists at Queen Square will work with people affected by Parkinson’s and non-psychology health professionals to design specialist interventions to help people affected by Parkinson’s cope with key mental health needs, such as adjusting to a Parkinson’s disease diagnosis, anxiety, depression, and helping people with Parkinson’s and those around them to improve management of memory and thinking problems.
Who: You may be eligible to participate if one of the following applies to you:
- Diagnosed with Parkinsons within the last 3 years
- Diagnosed with Parkinsons at any time AND have anxiety or depression
- Diagnosed with Parkinson’s and cognitive impairment
Contact: Jennifer Foley – Principal Investigator (Jennifer.foley@nhs.net)
Ongoing Studies - No Longer Recruiting Participants
PD-Care: Personalized Care for People with Parkinson's
Why: Previous research has shown that those with Parkinson’s would benefit from more personalised, tailored care, and improved ways of being involved in self-management of their symptoms. The PD-Care study aims to develop and evaluate a new and practical way of personalising and improving care for people with Parkinson’s who are living at home.
What: This project includes looking at the existing evidence about what helps people manage their Parkinson’s at home and asking those with Parkinson’s about their experiences. Those with Parkinson’s, their partners/carers, and health care professionals will co-design a toolkit with the research team. This will be further developed and tested in a randomised controlled trial. The aim is that the novel tool, the ‘My PD-Care’ toolkit, will enable those with Parkinson’s and their partners/carers to take active control of symptom management.
Who: People who have been diagnosed with Parkinson’s and are living in the community. We are also interested in including partners of people with Parkinson's, or those who help and support them.
More information: Visit the PD-Care website
Completed Studies
PRoBaND: Parkinson's repository of biosamples and network datasets
Why: There are multiple genes associated with Parkinson’s. The PRoBaND studies aims to determine the proportion of participants with Parkinson’s who have gene mutations associated with Parkinson’s disease to better understand genetic and biomarker factors which affect the expression of Parkinson's Disease.
What: The PRoBaND study will record the clinical features and progression rate of patients with early Parkinson's disease, in order to stratify patients according to different expression of the disease, relating to motor severity, response to anti-parkinson medication, and the presence of non-motor features. Participants will provide blood and saliva samples, and complete questionnaires about their Parkinson’s symptoms.
Who: You may be eligible to participate if you meet one of the following:
- Adults diagnosed with Parkinson’s within the past 3 years;
- Adults diagnosed with Parkinson’s before the age of 50
- Adults with siblings diagnosed with Parkinson’s
More information: PRoBaND study website
Back to Completed Studies list
The CROWD Study: Genetic determinants and biomarker discovery for neurological involvement in Wilson's disease
Why: The CROWD study aims to identify genetic factors that determine whether someone with a diagnosis of Wilson’s disease will develop neurological involvement, and to develop new ways to monitor the effects of Wilson’s disease in the brain.
What: Participants will complete an online questionnaire and provide a saliva sample for genetic testing using a collection kit sent via post. A subset of participants will be invited to attend the National Hospital for Neurology and Neurosurgery for a baseline visit and a follow up visit up to 18 months later. At each visit, participants will have a combination of in depth clinical assessments, blood tests and an MRI scan. Participants also have the option to complete a lumbar puncture or a skin biopsy at their baseline visit.
Who: Adults diagnosed with Wilson’s disease living in the UK.
More information: CROWD study website.
Back to Completed Studies list
CUSSP: The CloudUPDRS smartphone software in Parkinson's study
Why: The CUSSP study aims to find better ways to monitor Parkinson’s symptoms remotely. Specifically, the study will try to determine how accurate a smartphone software application called ‘CloudUPDRS’ is at monitoring Parkinsonian symptoms by comparing clinical assessments made by the app to those made in hospital.
What: Participants will be invited for a study visit where they will be given a smartphone with the CloudUPDRS app installed and given a tutorial on how to use the app. Participants will complete the app's assessments as well as completing a standard motor examination and pen-and-paper questionnaires about their health, Parkinson’s symptoms, and mood.
Who: People diagnosed with Parkinson’s.
More information: CloudUPDRS study website
Back to Completed Studies list
CLaSP: Care of late-stage Parkinsonism
Why: The aim of this project is to evaluate the needs and provision of care for patients in the late stages of Parkinsonism and their carers in several European countries. The study aims to compare the effectiveness of different health and social care systems and to lay the foundation for improved outcomes in this population.
What: Participants will take part in interviews and complete questionnaires assessing current healthcare and social care arrangement. Researchers will assess the needs, provision of care and use of healthcare resources, and their impact on patient and carer outcomes. Information collected from participants will be supplemented by review of national and regional databases and available literature. These will be investigated to identify current practice and use of healthcare resources to evaluate the evidence for effective management strategies.
Who: People diagnosed with Parkinson’s for more than 7 years, meeting standard criteria for advanced stage Parkinson’s. Carers and family members will also be asked to take part in the study.
More information: CLaSP ClinicalTrials.gov page
Back to Completed Studies list
Imaging neuromelanin and iron in Dystonia and Dystonia/Parkinsonism
Why: This study aims to investigate the metabolism of iron and neuromelanin in dystonia and dystonia/parkinsonism in order to improve our understanding of these rare conditions and explore the possibility of using iron or neuromelanin neuroimaging as potential biomarkers for disease diagnosis and follow-up.
What: Study participants will be asked to attend singular study visit consisting of a clinical examination and some basic questionnaires, as well as an MRI scan.
Who: People with dystonia or dystonia/parkinsonism under the age of 60.
More information: Study information on clinicalTrials.gov
Back to Completed Studies list
SysMedPD: Systems medicine of mitochondrial and biochemical Parkinson's disease and other related movement disorders
Why: People with Parkinson’s often experience different symptoms and respond differently to treatments, and there is growing consensus that Parkinson’s is a diverse condition with multiple causes. This study aims to categorise people with Parkinson’s based on the function of their mitochondria – the "power house" of our cells. The aim is that the SysMedPD study will eventually aid in the development of personalised medicine approaches for Parkinson’s in the future.
What: Participants will be invited for one research visit (held at the Royal Free Hospital London) with an optional follow-up visit after two years. Study assessments will include blood and urine sample collection (after over-night fasting), clinical examination and the completion of clinical scales and questionnaires evaluating Parkinson's symptoms and cognitive function. Additional optional assessments which will be performed on a voluntary basis will include a skin biopsy and/or lumbar puncture to collect cerebrospinal fluid (CSF).
Who: Adults diagnosed with Parkinson’s.
More information: SysMedPD study page at clinicalTrial.gov
Back to Completed Studies list
PD-PAL: Evaluating the effectiveness of a combined person-centred intervention of advanced care planning (ACP) and care coordination for people with Parkinson's and family care givers
Why: Parkinson’s is traditionally known as a movement disorder, but recent evidence has shown the negative impact of non-motor symptoms, increased caregiver distress, and difficulty in providing effective palliative care in the late stages of disease progression. There is limited access to and limited knowledge about palliative care services for people with advanced Parkinson’s. Advance Care Planning (ACP) is a process of communication between those with Parkinson’s, their caregivers, and family about care and treatment preferences. It enables patients to outline goals and preferences for future medical treatment and care and has been shown as a potential strategy to improve communication between people with Parkinson’s and healthcare professionals. ACP could benefit people with Parkinson’s in relation to their advanced disease and involving palliative care at an earlier stage, but it has not been studied yet. This study aims to examine the effectiveness of a community-based outpatient palliative care intervention for people with Parkinson’s and their family caregiver compared to care as usual
What: Participants (people with Parkinson’s and their nominated supporters) will be invited for three study assessments over a 12-month period: a baseline visit, a 6-month follow-up, and 12-month follow-up. Visits will consist of answering questionnaires, a physical examination, and some ‘thinking’ activities. The nominated supporter will also complete questionnaires. Participants will be randomly assigned to an intervention group or control group. Those in the intervention group will meet with the PD-PAL study nurse to assess and support the different health, emotional and social needs, discuss and coordinate existing care, and make a plan for future care needs, in addition to their normal care. Participants in the control group will continue to receive normal care but will not meet with a PD-PAL study nurse.
Who: Adults diagnosed with Parkinson’s and their caregiver
More information: PD-PAL study website
Back to Completed Studies list