Tracking Parkinson's
Tracking Parkinson's

Publications

Tracking Parkinson's: Study Design and Baseline Patient Data

Describing the Tracking Parkinson's Study

This paper sets the scene and describes the study, summarising how many people with Parkinson's joined the study, how long they had Parkinson's when they joined, and a whole range of other facts and figures.

Features of GBA-associated Parkinson's disease at presentation in the UK Tracking Parkinson's study

Could memory problems in people with the GBA subtype be prevented with early treatment?

A small proportion of people with Parkinson's have a gene variation in an area called GBA. Previous work suggested that people with this variation have a faster rate of progression and are more likely to get memory problems, but previous studies were much smaller and some did not study the GBA gene in as much detail as we did for this work. We found that our cases with GBA did not have any increase in memory problems, compared to cases without this GBA change. This may be due to the relatively early stage of Parkinson's. This suggests that treatments that are in development specifically for treating GBA-variant Parkinson's could be preventive, and help prevent memory problems from developing. 

Utility of the new Movement Disorder Society clinical diagnostic criteria for Parkinson's disease applied retrospectively in a large cohort study of recent onset cases

Using new criteria to make the diagnosis of Parkinson's much more accurate, and to improve clinical trials of new treatments.

Making an accurate diagnosis of Parkinson’s is essential to test new treatments. Previous studies found that between 4 and 14% of cases entering treatment studies with a diagnosis of Parkinson’s did not have a parkinsonian disorder. A further group of patients may not have Parkinson’s disease, but one of the related conditions which are together called ‘atypical parkinsonism’. Including these cases in clinical trials of new treatments for Parkinson’s is a big problem, as they will not show any benefit, and it reduces the chance of finding effective new treatments for Parkinson’s. Improving diagnostic accuracy can be achieved by setting strict criteria, which assess a whole range of signs and symptoms. The most recent MDS criteria were developed...

Equating scores of the University of Pennsylvania Smell Identification Test and Sniffin' Sticks test in patients with Parkinson's disease

Defining the best way to test sense of smell in Parkinson's, and how to compare studies using different methods.

Loss of sense of smell is frequent in Parkinson’s, and is noticed by some people with Parkinson’s, but not realised by many until a test of sense of smell is performed. We often assess someone’s sense of smell as part of research into Parkinson’s, as it tells us about this particular area of brain function (the olfactory bulb which is in the nose, and its connections into the brain). But to be sure that we are understanding the findings of these smell tests, we need to compare the results to people without Parkinson’s, to know what is abnormal. The problems with this are that 1. We all lose our sense of smell slowly as we get older, and women have a better sense of smell than men. 2. Two main smell tests are...

Vascular disease and vascular risk factors in relation to motor features and cognition in early Parkinson's disease

Are we overlooking vascular risk in some Parkinson's patients?

Prevention of problems in the blood supply to the brain (where narrowing or blockage can cause strokes or mini-strokes) and to the heart (where narrowing or blockage can cause heart attack and angina chest pains) is important. One type of treatment that is available lowers cholesterol, and is in a group of drugs called statins. Initially statins were used to lower cholesterol only when the levels in the blood were high. Then it was found that further problems could be prevented if statins were used after a blood supply problem had happened, even if cholesterol levels were not high. More recently statins have been used before any blood supply problems, if a person had an increased risk of such a problem. Now we are thinking of other signs that someone has blood supply problems to the brain, caused by narrowing or blockage of a whole lot of tiny blood vessels (rather than one alrge blood vessel being blocked, which happens with a stroke). This type of blood vessel blockage is called ‘small vessel disease’. This can cause memory problems and walking difficulties. The problem is that, when a person with Parkinson’s develops memory problems or walking difficulties, it may be thought that this has been caused by the Parkinson’s. We think it is important to think of ‘small vessel disease’ as a possible cause of these problems in people with Parkinson’s, because we know how much benefit there is from statin treatment, when taken by people who are at risk of problems with their blood supply. In this study, we measured the ‘vascular risk’, which is the future risk of a problem occurring with the blood supply to the brain or heart, and checked if people with increased risk were taking statin treatment. We also checked if people with increased risk had more problems with memory and walking that people without increased risk, and found that there were more of such problems. We found that many more people were taking statins after having had a blood supply problem, compared to those who had not yet had such a problem, but had an increased risk in the future. We have shared these results at many meetings with people with Parkinson’s and doctor and nurse specialists, to explain how ‘vascular risk’ is checked, and guide people who who may get benefit to take statin treatment. There are two papers about this topic, the first reports on the findings with memory and walking in relation to vascualr risk, and the second assessed the use of statin treatment. We think this is a very important message. It may seem obvious that people with Parkinson’s, who have an increased ‘vascular risk’ should be offered statin treatment, but our findings show that only half as many people with high future risk are taking statins, compared to people who have already had a blood supply problem (such as stroke or heart attack). 

Statins are underused in recent-onset Parkinson's disease with increased vascular risk: findings from the UK Tracking Parkinson's and Oxford Parkinson's Disease Centre (OPDC) discovery cohorts

Are we missing treatments that could prevent future health problems due to blockages in circulation?  Could treatment also reduce memory and walking problems in people with Parkinson's?

Prevention of problems in the blood supply to the brain (where narrowing or blockage can cause strokes or mini-strokes) and to the heart (where narrowing or blockage can cause heart attack and angina chest pains) is important. One type of treatment that is available lowers cholesterol, and are in a group of drugs called statins. Initially statins were used to lower cholesterol only when the levels in the blood were high. Then it was found that further problems could be prevented if statins were used after a blood supply problem had happened, even if cholesterol levels were not high. More recently statins have been used before any blood supply problems, if a person had an increased risk of such a problem. Now we are thinking of other signs that someone has blood supply problems to the brain, caused by narrowing or blockage of a whole lot of tiny blood vessels (rather than one alrge blood vessel being blocked, which happens with a stroke). This type of blood vessel blockage is called ‘small vessel disease’. This can cause memory problems and walking difficulties. The problem is that, when a person with Parkinson’s develops memory problems or walking difficulties, it may be thought that this has been caused by the Parkinson’s. We think it is important to think of ‘small vessel disease’ as a possible cause of these problems in people with Parkinson’s, because we know how much benefit there is from statin treatment, when taken by people who are at risk of problems with their blood supply. In this study, we measured the ‘vascular risk’, which is the future risk of a problem occurring with the blood supply to the brain or heart, and checked if people with increased risk were taking statin treatment. We also checked if people with increased risk had more problems with memory and walking that people without increased risk, and found that there were more of such problems. We found that many more people were taking statins after having had a blood supply problem, compared to those who had not yet had such a problem, but had an increased risk in the future. We have shared these results at many meetings with people with Parkinson’s and doctor and nurse specialists, to explain how ‘vascular risk’ is checked, and guide people who who may get benefit to take statin treatment. There are two papers about this topic, the first reports on the findings with memory and walking in relation to vascualr risk, and the second assessed the use of statin treatment. We think this is a very important message. It may seem obvious that people with Parkinson’s, who have an increased ‘vascular risk’ should be offered statin treatment, but our findings show that only half as many people with high future risk are taking statins, compared to people who have already had a blood supply problem (such as stroke or heart attack). 

Variation in Recent Onset Parkinson's Disease: Implications for Prodromal Detection 

Can we identify Parkinson’s much earlier than we do presently, using a set of ‘non-motor’ features? And if we did identify Parkinson’s earlier with this method, how many cases would be found, and would they be the same or different compared to cases diagnosed the way we do now?

By the time the diagnosis of Parkinson’s is made, quite a lot of nerve damage has already happened. The diagnosis is usually made after motor symptoms develop, such as tremor, walking difficulty, or difficulty with hand or arm function such as poor writing or stiffness. But many people also have ‘non-motor’ symptoms such as loss of sense of smell, sleep problems when they talk and move abnormally while asleep, constipation, or depression. We are interested to check how often people with a recent Parkinson’s diagnosis have one or more of these ‘non-motor’ problems. This would help us to know if we should look for these problems in combination, to find cases of Parkinson’s earlier. This could become a method to ‘screen’ for early Parkinson’s. If we can find Parkinson’s earlier, we would be more likely to get benefit from new treatments which may slow down or prevent progression. But we need to know if people with non-motor problems are different from people without non-motor problems, for example do they have more memory problems? If they did have more memory problems, they might get benefit from treatments designed to help memory, and less benefit from treatments designed to help other problems. Our study found that only 2% of people had all 4 of these ‘non-motor’ features, so using this method this would fail to find almost all cases of very early Parkinson’s. We found that 11.6% of people had none of the 4 ‘non-motor’ features, so using the presence of one of more feature would miss quite a lot of cases. People with more ‘non-motor’ features had more severe Parkinson’s overall, and were younger than average. Knowing these details is very helpful, as we go on to help develop ‘screening’ methods to find Parkinson’s much earlier than we do now, as we move forward to testing treatments that may prevent or slow progression.

Olfaction in Parkin single and compound heterozygotes in a cohort of young onset Parkinson's disease patients

Do all subtypes of Parkinson's affect the person's sense of smell? If not, what does this tell us about the causes of Parkinson's?

Loss of sense of smell is frequent in Parkinson’s, and is noticed by some people with Parkinson’s, but not realised by many until a test of sense of smell is performed. But some people with Parkinson’s have nothing wrong with their sense of smell, which tells us that this part of their brain is working entirely normally. We need to understand why this is, because it suggests that the causes of Parkinson’s, or the brain pathways affected by Parkinson’s, are not the same in everyone. If we learn more about why this is, we can begin to develop treatments which are designed to fix the pathways that are damaged. In this work, we looked at the sense of smell in people with a rare genetic mutation (in what is called the Parkin gene). Previous work suggested that these people did not lose their sense of smell. We wanted to check whether everyone with an abnormal Parkin gene still had normal sense of smell. Also, we wanted to check whether one copy of the abnormal Parkin gene being abnormal affected the sense of smell differently than 2 copies of the abnormal Parkin gene. (Everyone has 2 copies of each gene, so it is possible for one or both copies to be abnormal). We found that people with 2 copies of the abnormal gene had normal sense of smell but people with 1 copy of the abnormal gene had lost their sense of smell. This may seem the wrong way round, but it fits with what has been reported before. This tells us that people with 2 copies of the abnormal gene don’t get damage to the pathway that gives us our sense of smell (from the nose to the brain). This is surprising because people with 2 copies of the abnormal Parkin gene get Parkinson’s at a young age, usually before they reach 50 years old. We need to study this further, as this is one part of the jigsaw of what causes Parkinson’s, and which brain areas are affected. Unpicking this jigsaw will help us get closer to the reasons Parkinson’s develops, and why it affects different parts of the brain in different ways.

Print Print | Sitemap
© D2016