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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
All research activity is carried out according to the UK authorities' guidelines regarding the risk of COVID-19. Following a temporary halt of all research activities between March-June 2020, our researchers are currently working to resume research in ways that ensure the safety and wellbeing of study participants. For many research studies, this means that participants can complete many (or all) research-related activities from home, via telephone, video-conferencing 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 trials' 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
PREDICT-PD: Healthy people aged 60-80 (no Parkinson's diagnosis)
Understanding hallucinations in Parkinson’s and Lewy Body disease (LBD)
Parkinson's Families Project: People with young-onset Parkinson's or family history of Parkinson's
AND-PD: Anxiety in Parkinson's
Ongoing and Closed Studies - no longer recruiting new participants
Neurological involvement in Wilson’s disease: The CROWD study
CUSSP: Testing The CloudUPDRS Smartphone Software in Parkinson's Study
Imaging Neuromelanin and iron in dystonia and dystonia/Parkinsonism
- Understanding the neural control of dystonic movement (DYT1 dystonia)
Open Studies - currently recruiting participants
qMAP-PD: People recently diagnosed with Parkinson's
Who: People aged between 30 and 70 years who belong to one of the following groups:
- People diagnosed with Familial Parkinson's disease with a known genetic abnormality that has been confirmed through genetic testing.
- People diagnosed with REM sleep Behavior Disorder (RBD).
Why: Disease course and presentation for Parkinson’s differ widely between individual patients. However, there is currently no reliable way to predict crucial clinical outcomes such as the rate of progression, response to medication and others. The qMAP-PD study aims to combine novel MRI anatomical imaging techniques with detailed clinical and genetic data to develop tools to predict clinical outcomes of interest for Parkinson’s patients.
What: Participants will be followed-up for assessments over four years. Assessments will include an advances MRI scan, completing of clinical scales and questionnaires evaluating Parkinsonian and other symptoms and cognitive abilities and a blood sample collection.
Contact: Charlotte Dore - Study Manager (ion.qmap@ucl.ac.uk)
Dr. Chris Lambert - principal investigator (christian.lambert@ucl.ac.uk)
Vision in Parkinson's (VIP)
Who: - People diagnosed with Parkinson’s;
- Healthy individuals unaffected by any neurological disease.
Why: For some people with Parkinson’s visual symptoms take the form of hallucinations. For others it can be difficulties with everyday tasks such as reading the newspaper or following maps. These problems are not well studied in Parkinson’s and there is a real need to understand these symptoms better. Our study will measure changes in vision in a large number of people with Parkinson’s and healthy volunteers, via the internet. Our aim is to work out what sometimes goes wrong with vision in people with Parkinson’s.
What: You can take part in our study using your own computer at home. If you decide to participate, you will be asked to complete a few online questionnaires about your health and then perform a series of simple vision tests. Vision tests include several optical illusions, each designed to challenge a different vision process in the brain to find out which parts of vision are most affected.
More information: Vision in Parkinson’s research website.
Contact: Dr. Rimona Weil - principal investigator (r.weil@ucl.ac.uk)
Dr. Louise-Ann Leyland – postdoctoral researcher (l.leyland@ucl.ac.uk)
PD-FRONTLINE
Who: People with Parkinson’s disease who live in the UK.
Why: PD Frontline aims to put people with Parkinson’s at the forefront of clinical trials and research. Many of the drugs developed to protect against or slow down the progression of Parkinson’s are targeted at specific genes which we know influence the development of Parkinson’s.
What: PD Frontline aims to identify people with abnormalities in two genetic risk factors for Parkinson’s, called LRRK2 and GBA, who can be enrolled in clinical trials testing drugs specifically targeting these genes. If you currently live in the UK and would like to #GetTrialReady, you can register for the study online at www.pdfrontline.com. It will take about 10 minutes.
More information: PD Frontline’s study website.
Contact: The PD Frontline study team (pdfrontline@ucl.ac.uk)
PREDICT-PD: Healthy people aged 60-80 (no Parkinson's diagnosis)
Who: Healthy people aged between 60 and 80 years, who have access to the Internet, and do not have a current diagnosis of Parkinson’s. People with a family history of Parkinson’s are also encouraged to participate.
Why: PREDICT-PD is an innovative project that aims to identify people at high risk of Parkinson’s at an early stage, even before motor symptoms appear. The study uses a set of simple tests that screen for factors which are suspected to be linked to increased risk of Parkinson’s.
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.
More information: The PREDICT-PD website
Contact: Kemi O'Grady – study coordinator (k.cracknell@ucl.ac.uk)
PD-Care: Personalized Care for People with Parkinson's
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.
Why: Studies have 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 study therefore 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. Professionals will also be trained in the use of the toolkit to provide better support to reduce disability, improve quality of life, and decrease unnecessary hospital admissions.
The different stages to the study require different levels of involvement for participants and might include being interviewed about their experiences or helping develop and test the new toolkit. To learn more about research participation please visit the involvement section of the PD-Care study website.
More information: www.ucl.ac.uk/pd-care
Contact: The PD-Care research team: pd-care@ucl.ac.uk
RAPSODI: Remote Assessment of Parkinsonism Supporting Ongoing Development of Interventions
Who: People with Pakinson’s who carry a GBA gene mutation ; Or,
People with Gaucher disease and their family members.
Why: The research team is interested in the GBA gene, which is carried by people with Gaucher disease, and its ability to provide some unique insights into why people might develop Parkinson's disease. The study aims to use on-line tools to find new ways of diagnosing Parkinson's earlier and help develop life changing treatments.
What: Study participation is done remotely from home 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, and keyboard tap tests and memory tasks. Smell test and saliva DNA kits will be mailed to participants to be completed at home and mailed back to the research team.
More information: RAPSODI study website
Contact: The RAPSODI study team (rapsodi@ucl.ac.uk)
Parkinson's Families Project: People with young-onset Parkinson's or family history of Parkinson's
Who: People with Parkinson’s who were diagnosed before the age of 45 ;
Or, people who were diagnosed with Parkinson’s at any age but have other family members (blood relatives) who also have/had Parkinson’s.
The study is also recruiting participants’ family members (e.g., brother, sister, parent, etc.).
Why: 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. 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.
What: Participants will provide some basic demographic and health-related information as well as providing a DNA sample, collected either via a blood or saliva sample. There is light-touch follow-up for this study that involves completing questionnaires at home.
More information: Parkinson’s Families Project website
Contact: PFP Study Co-ordinator (ion.pdresearch@ucl.ac.uk).
Understanding hallucinations in Parkinson’s and Lewy Body disease (LBD)
Who: People with Parkinson’s or Lewy Body disease who have visual hallucinations.
Why: We aim to understand how hallucinations happen in Parkinson’s and Lewy Bodies, so that we can help to develop new targets for treatments.
What: We will go through some screening questions on the phone, and then we will invite you to take part at Queen Square. The study will involve some vision tests on a computer and some thinking and memory questions. Some people may be invited to have an MRI brain scan as well. The study will last 2-3 hours and involves one visit only.
More information: The research team website.
Contact: Dr. Rimona Weil – primary investigator (r.weil@ucl.ac.uk)
Dr Louise-Ann Leyland – postdoctoral researcher (l.leyland@ucl.ac.uk)
PROSPECT-UK: Longitudinal UK study of progressive supranuclear palsy (PSP), cortico-basal syndrome and multiple system atrophy (MSA)
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.
Why: This is a longitudinal follow-up study studying the causes, biology and clinical progression of atypical parkinsonian disorders
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 MRI imaging scans and lumbar puncture to collect cerebrospinal fluid (CSF) samples.
For participants who cannot come onsite, or those who do not wish to, remote participation may be offered.
More information: PROSPECT-UK study page on clinicalTrial.gov
Contact: The PROSPECT study team (prospect@ucl.ac.uk)
AND-PD
Who: People diagnosed with Parkinson's disease and are aged between 18 and 89 years old.
Why: Anxiety has been listed as the second most important issue by people with Parkinson’s and depression is also common in Parkinson’s, affecting approximately 40% of patients. 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 and associated clinical features 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, which is often associated with anxiety, differ in people with and without Parkinson’s. Finally, we would like to see if there are structural or functional brain differences between people who have anxiety in Parkinson’s and those who do not.
What: You will be asked to attend three (3) study appointments over a 12-month period: the screening visit (visit 1), baseline (visit 2) and follow-up at 6 months (visit 3) and follow-up at 12 months (visit4/final visit). Visit 1 can be combined with visit 2. These will consist of a physical examination, psychology testing and computer-based tasks. Participants can also have (optional) brain scans (MRI) to measure brain responses correlating with measures of anxiety in different regions of the brain.
The study visits will either be online or at the clinical centre where you were recruit to the study. The MRI scans will be carried out either at Wellcome Centre for Human Neuroimaging, Queen Square
More information: https://and-pd-ucl.netlify.app/
Contact: The AND-PD study team (and-pd@ucl.ac.uk) Monday to Friday 09:00 to 17:00
PD-PAL: Evaluating the effectivenees of a combined person-centred intervention of Advanced Care Planning (ACP) and care coordination for people with Parkinson's and family care givers
This study is testing a new short-term care service offering additional support for people with Parkinson’s and the people closest to them.
What: Participants (those with Parkinson’s and their nominated supporter) will be invited for three study assessments over a 12-month period: a baseline visit, a follow-up visit after 6 months and again at 12 months from the first visit. The visits consist of answering some questionnaires, a physical examination and some ‘thinking’ activities. The nominated supporter will complete questionnaires.
Two groups of people will be compared: an intervention group and a control group, which will be allocated after the baseline visit. Those receiving the intervention will continue with their usual care and in addition will meet with the PD-Pal study-nurse on several occasions to assess and support the different health, emotional and social needs, discuss and coordinate existing care, and make a plan for future care needs. Meeting with the PD-Pal nurse will take place over a 6-month period (between the baseline visits and first follow-up visit); for a total of 15 hours.
Those in the control group will continue to receive their usual care from their established neurology and/or home care team.
The study assessment and PD-Pal study-nurse visits can take place at a location of the participants choosing, for example at home or remotely.
There may also be the chance to wear a monitoring device and take part in interviews.
Contact:
For more details about the study please contact: rf-tr.pd-pal@nhs.net or Philip Poku (Research Nurse) Tel: 020 7794 0500 Ext: 32964
Ongoing & Closed Studies - no longer recruiting new participants
CLaSP: Care of Late-Stage Parkinsonism
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. [Study no longer recruiting new participants]
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 health-care and social care arrangement. Researchers will assess the needs, provision of care and use of health-care 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 interrogated to identify current practice and use of healthcare resources and drug usage and to evaluate the evidence for effective management strategies.
Recruitment period: 2014-2017.
Number of participants: 152 participants were assessed in the UK; 731 Participants were assessed across all European sites
More information: Trial page at clinicalTrial.gov
Contact: Prof. Anette Schrag (a.schrag@ucl.ac.uk)
Back to Ongoing & Closed Studies list
The CROWD study: Genetic determinants and biomarker discovery for neurological involvement in Wilson’s disease
Who: People with a diagnosis of Wilson’s disease, who are age 16 years or over and live in the UK.
Why: We aim to identify genetic factors that determine whether someone with a diagnosis of Wilson’s disease will develop neurological involvement or not and to develop new ways to monitor the effects of Wilson’s disease on the brain.
What: In the first part of the study we are inviting participants to complete an online questionnaire and then provide a saliva sample, for genetic testing, using a collection kit sent via post. In the second part of the study we are inviting a subset of participants to attend the National Hospital for Neurology and Neurosurgery for a baseline visit and then 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. It will be optional for participants to have a lumbar puncture or a skin biopsy at their baseline visit.
Back to Ongoing & Closed Studies list
CUSSP: Testing The CloudUPDRS Smartphone Software in Parkinson's Study
Who: People diagnosed with Parkinson’s [Study no longer recruiting new participants].
Why: This study aims to find better ways to monitor Parkinson’s symptoms remotely, even at home. Specifically, the study will try to determine how accurate a smartphone software application (App) 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 in which be given a smartphone with the cloudUPDRS App and will be shown how to use it. 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.
Official title: The CloudUPDRS Smartphone Software in Parkinson’s (CUSSP) study - a pilot single-site, open label study comparing the validity and usability of smartphone software for home monitoring of symptoms and signs in Parkinson’s disease
More information: The CloudUPDRS project website: www.updrs.net
Contact: Dr. Ashwani Jha (ashwani.jha@ucl.ac.uk)
Back to Ongoing & Closed Studies listSysMedPD: Systems Medicine of Mitochondrial and Biochemical Parkinson’s Disease and other related movement disorders
Who: Any adult people (aged 25-75) with Parkinson’s, with or without a confirmed genetic background. [Study no longer recruiting new participants]
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 station" of our cells. We hope that this research 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).
More information: SysMedPD study page at clinicalTrial.gov
Contact: The sysMedPD research team (rf-tr.sysmedpd@nhs.net)
Back to Ongoing & Closed Studies listStudy of mild traumatic brain injury (concussion) in sports
Who: Active sportsmen and sportswomen playing contact / collision sports. [Study no longer recruiting new participants]
Why: The study aims to develop biomarkers that will aid in the diagnosis and prognosis of mild traumatic brain injury (mTBI), in order to improve the clinical evaluation and limit potential neurological complications following mTBI.
Back to Ongoing & Closed Studies list
Who: People with dystonia or dystonia/parkinsonism under the age of 60. [Study no longer recruiting new participants]
Why: The study aims to investigate the metabolism of iron and neuromelanin in dystonia and dystonia/parkinsonism. This is in order to improve our understanding of these rare conditions and explore the possibility to use iron or neuromelanin neuroimaging as potentially easily accessible 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 a 35-minutes MRI scan.
More information: Study information on clinicalTrials.gov
Contact: Dr. Sebastian Schreglmann (skgtsrs@ucl.ac.uk)
Understanding the neural control of dystonic movement
Who: Anyone that has symptoms of dystonia due to a genetic mutation called DYT1. Initially we will study individuals that have not had deep brain stimulation but we are happy to hear from anyone with DYT1 dystonia as we can register your interest for future studies.
Why: Why dystonia occurs remains a mystery. There is a selective problem with the control of movement that is still poorly understood. We are a collaborative group of neuroscientists, neurologists and engineers that apply state of the art robotic studies to investigate the brain's control of dystonic movements so that we can develop new ways to diagnose, monitor and treat dystonia.
What: Participants are invited to our lab (at Queen Square, London) for a single study visit lasting about 2 hours. Assessments include a clinical history and examination and then a 90-minute task which is similar to playing a simple computer game on a screen. You will need to move a robotic arm in response to instructions on the screen.
More information: Dystonia research group website.
Contact: Dr. Anna Sadnicka - principle investigator (a.sadnicka@ucl.ac.uk)