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Findings from the NSHD clinics and future plans

Researchers will provide an update on the clinical sub-studies and their future plans.

Outstanding questions from the Neuroimaging talk

Does dementia have a genetic link? If both parents had dementia, will I get it?

We still don't fully understand the causes of dementia and the causes of different types of dementia may be different. However, we do know that people with relatives with Alzheimer's disease may have slightly higher chances of developing the disease themselves partly via the inheritance of some genes, but it does not mean they will definitely develop it. We also know that up to a third of dementia cases can be prevented or delayed by modifiable risk factors such as stopping smoking, having good cardiovascular health and exercising, keeping socially and mentally active, even if you have a slightly higher increased risk due to family history.

For more information see Alzheimer's Research UK helpful website: https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/alzheimers-disease/risk-factors/

 

What kind of treatments for dementia do you anticipate in future?

We hope that there will be different treatments for different diseases that cause dementia, and various treatments for different stages of the disease. Any disease-modifying treatment could improve on the quality of life for people with dementia. There are efforts to understand causes and prevent disease in the first place by making changes to our lifestyle and health; efforts to understand who may be at greatest risk and may need tailored advice; efforts to diagnose diseases earlier to optimise options which could be in the form of a blood test;  efforts to treat those with brain diseases by slowing the progression of disease, or delaying the cognitive symptoms, which could be in the form of medication; efforts to treat those with more advanced stages of brain disease and associated memory and dementia symptoms which most likely will be in the form of medication.

 

My mother had a stroke and I wonder what can be done to avoid strokes? Is research being done on strokes from the data that we're giving?

A stroke occurs when bloody or oxygen supply to a part of the brain is suddenly cut off which may cause problems with movement, coordination, speech, sight. Some people may also develop problems with memory and thinking and may be diagnosed with post-stroke dementia or vascular dementia. We know that there are things that increase your chance of developing a stroke, similar to those for heart disease and even dementia. Things you can do to lower your chances include eating healthy, being physically active, quite smoking, control high blood pressure and cholesterol and blood sugar.

For more information, please go to the British Heart foundation website which includes advice and latest research around this: https://www.bhf.org.uk/informationsupport/conditions/stroke

We have a few participants taking part in the imaging study who have had strokes.

 

For those who, because of lockdown, were unable to complete the 2nd part of the Insight46 study and were interviewed by phone, will we be given the opportunity to have the full second part of the study in your next phase?

There will be the opportunity for half of the participants who took part in the 2nd part of the Insight46 study (whether remote or in person) to come to a full part in the next phase which will hopefully restart in summer 2021. We are really appreciative of people's participation and we look forward to hopefully seeing you again soon!

 

Are you still carrying out yearly medicals or will they resume once the COVID pandemic has eased.

As part of our next testing phase we will be contacting participants to take part in London-based visits or home visits which will include some assessments of health. We hope to restart these in Summer 2021 and will be following strict guidelines to minimise the covid risk and optimise safety for our participants, including the research team being vaccinated and engaging in high standards of personal protection and hygiene.

 

How much are you told about your results? Would you for example tell the participant that they should be on statins if there is a minor problem?

If during the course of the Neuroimaging sub-study we determine that you do have significantly clinically relevant findings, including high blood pressure or high cholesterol that may require treatment, we will inform you and your GP and recommend having further investigations in your local services. We will also inform you and your GP if any of the routine blood tests show any significant abnormalities that it would be in your interest to know about; or if the neurological examination reveals any significant abnormalities that the investigators consider it would be in your interest to know. We will not routinely provide you or your doctor with the results of the brain scans as they are for research purposes only, but will let you and your doctor know if there are any major abnormalities on the MRI scan (e.g. the presence of a tumour or a large aneurysm) which might affect your clinical care. You should be aware that being in a research study does not take the place of routine physical examinations or other appointments with your doctor, and should not be relied upon to diagnose or treat medical problems.

 

Will you be adding mental health and other tests to Phase 3 as a result of COVID?

Throughout the life course we have always had an interest in the mental health of participants, this is an active area of our research and we are keen to take this forward in phase 3. We will also be able to link up information given from participants in the remote COVID assessments about mental health, wellbeing and loneliness during this time.

 

I have always had problems with your memory tests, even when I was young. How can you tell whether my brain function has gone down hill?

Given that we have the results of all of the memory tests that you have ever done with us, including from when you were younger (starting from age 8!), we are able to track how your results change over time and are mainly comparing your performance to your previous assessments.   It is normal for people to do worse on memory tests as they get older, whilst some other cognitive skills get better like reading. We are only able to see if your brain health is changing if you have numerous brain scans over time.

 

Outstanding questions from the cardiac MRI talk

What is the criteria for participants to be selected for the MyoFit study?

We would offer recruitment to anyone in the NSHD cohort without conventional contraindications for MRI (such as metal clips in brain, pacemakers, etc) and to persons who are not severely claustrophobic (although for mild claustrophobia we would try scanning in a different position to improve tolerability). We would not offer the CMR scan to persons known to suffer from moderate to severe asthma, to those with known kidney failure or very weak kidneys, to those with atrial fibrillation, or to persons known to have a certain severe problem of slow electrical conduction across the heart.

Persons with MRI-safe implants such as dental work, joint replacements, pins/screws in bones etc are considered safe and will be offered a CMR scan but we may call you before we confirm the slot, to gather details of your implant and confirm its safety.

In the first few months we will prioritise recruiting participants that are nearer to London to reduce the amount of travelling you will need to do on account of COVID but later we will be able to extend recruitment more widely. If participants from zones distant to London are especially keen to participate sooner rather than later, then we will work to offer them an early CMR slot so do let us know your prefernces.