COVID-19 Psychiatry and Neurological Genetics (COPING) study
NIHR Mental Health BioResource launches a new study to assess impact of COVID-19 on mental, physical and neurological health
The COVID-19 Psychiatry and Neurological Genetics (COPING) study is a new study being run from the NIHR Mental Health BioResource.
The Mental Health BioResource is a theme from the NIHR BioResource launched in September 2018. It is led by the NIHR BioResouce Centre Maudsley in London. Their first study was to investigate the Genetics Links to Anxiety and Depression (GLAD), followed by the Eating Disorders Genetics Initiative (EDGI), now they are looking at the affects of COVID-19.
Previous research has shown that viral pandemics can lead to substantial distress in society and negatively influence mental and neurological health. The COPING study will assess the impact of the novel coronavirus (COVID-19) pandemic on mental and neurological health. We are interested in how different factors associated with the virus are affecting the population.
To take part in the COPING study you need to be a member of the NIHR BioResource. It involves completing an initial questionnaire which will take about 25-45 minutes with the option to consent to receive follow up questionnaires every two weeks throughout the pandemic. These follow-up questionnaires will take about 10-15 minutes to complete and will help researchers to understand how the impact of the pandemic may change over time.
Many participants of the NIHR BioResource have already been invited to get involved, including participants to the GLAD and EDGI studies. The research team would like to recruit a wide sample of participants to provide information on their physical, brain and psychological health. COPING are collaborating with other projects (such as the Repeated Assessment of Mental Health in Pandemics (RAMP) study) to recruit as many people as possible to get the broadest picture of the effects of COVID-19 on the population’s health.
Professor Gerome Breen, NIHR BioResource Maudsley Centre lead and who is leading the COPING team, said “We aim to understand the impact of the COVID-19 socio-economic crises and the effects of COVID-19 infection on mental and neurological health. We want to use social, psychological and genetic risk factors to find what predicts both resilience and risk.”
If you wish to join the COPING study but are not a member of the NIHR BioResource, you can join our partnered project RAMP. If you want to join the NIHR BioResource and/or the GLAD or EDGI projects, and provide a DNA sample, please contact email@example.com or go to GLAD or EDGI to check eligibility criteria and sign up.
Lastly, if you are an existing NIHR BioResource participant who wants to take part in COPING but have not received an invite, please email the COPING study.
For more information, download the COPING information sheet.
New partnership to sequence human genomes in fight against coronavirus
Thousands of patients severely ill with coronavirus will have their genetic code studied to help scientists understand whether a person’s genetics may influence their susceptibility to the virus.
- Genetic susceptibility to coronavirus to be tested in ground-breaking nationwide study
- Genomes of thousands of patients with coronavirus will be sequenced to understand how a person’s genetic makeup could influence how they react to the virus
- Genomics England partners with University of Edinburgh to lead research drive to support the search for new treatments
A major new human whole genome sequencing study will take place across the NHS, involving up to 20,000 people currently or previously in an intensive care unit with coronavirus, as well as 15,000 individuals who have mild or moderate symptoms.
Genomics England, is partnering with the GenOMICC consortium, Illumina and the NHS to launch the research drive, which will reach patients in 170 intensive care units throughout the UK.
The project is backed by £28 million from Genomics England, UK Research and Innovation, the Department of Health and Social Care and the National Institute for Health Research. Illumina will sequence all 35,000 genomes and share some of the cost via an in-kind contribution.
The study, facilitated by the University of Edinburgh and multiple NHS hospitals, will explore the varied effects coronavirus has on patients, supporting the search for treatments by identifying those most at risk and helping to fast-track new therapies into clinical trials.
Secretary of State for Health and Social Care Matt Hancock said:
As each day passes we are learning more about this virus, and understanding how genetic makeup may influence how people react to it is a critical piece of the jigsaw.
This is a ground-breaking and far-reaching study which will harness the UK’s world-leading genomics science to improve treatments and ultimately save lives across the world.
Since genetic discoveries need very large numbers of patients, the GenOMICC study ultimately aims to recruit every single COVID-19 patient who is admitted to intensive care in the UK.
Patients will only be enrolled in the study if they, or their next of kin, have given their consent.
As part of this study so far, DNA samples have been collected from almost 2,000 patients.
Chris Wigley, CEO of Genomics England, said:
At Genomics England, we are extremely proud to be working with the NHS and other partners in the fight against COVID-19, to understand why people respond differently to this infection.
Our goal with this study is to help the national response to this terrible pandemic, using the experience we have gained through the 100,000 Genomes Project, and leveraging our ongoing work in genomic research and healthcare.
As with all groundbreaking science, we don’t know what the answer is yet – but we are convening the finest minds in academia and industry to try to find out.
Genomics England will read the data from entire genomes – or genetic blueprints – of thousands of people who have been most severely affected by coronavirus and compare them to those who experience only mild symptoms.
Dr Kenneth Baillie, Chief Investigator at the University of Edinburgh, leading this study, said:
Our genes play a role in determining who becomes desperately sick with infections like COVID-19. Understanding these genes will help us to choose treatments for clinical trials.
The GenOMICC study was launched before this outbreak and it is recruiting in more than 160 ICUs across the country with tremendous support from the critical care community. We are excited to work with Genomics England to tackle this new and complex disease.
By combining the genome with rich clinical characteristics and comparing those who become severely ill with those that experience a much milder illness, the consortium hopes to gain new insights into how the virus affects us.
This ground-breaking research may help explain why some patients with coronavirus experience a mild infection, others require intensive care and why some patients die from the disease.
By discovering why some people are predisposed to developing life-threatening symptoms, the consortium will be able to identify treatments which have the best chance of success in clinical trials, and potentially identify people at extreme risk if they develop COVID-19.
This work – sequencing human genomes – complements the UK COVID-19 Viral Sequencing Programme (COG-UK) announced in March and its work already underway to sequence the genome of the virus itself, led by Public Health England and the Sanger Institute.
Professor Sir Mark Caulfield, Chief Scientist at Genomics England, said:
For the first time in a generation we face a global viral pandemic that is life threatening for some people, yet others have a mild infection. By reading the whole genome we may be able to identify variation that affects response to COVID-19 and discover new therapies that could reduce harm, save lives and even prevent future outbreaks.
Whole genome sequencing will be carried out by Illumina at its laboratories in Cambridge, UK, where they successfully delivered the 100,000 Genomes Project together with Genomics England and the NHS.
Paula Dowdy, General Manager and SVP Illumina, EMEA, said:
We have a long-standing partnership with Genomics England and are proud to support this new genomics initiative from our Cambridge-based lab. The results will establish a unique platform for researchers to understand the human response to coronavirus infection, leading towards new treatments and ways to control infection spread.
Today’s announcement demonstrates how different parts of the UK’s world-leading genomics community are working together to get a full picture of both the spread and impact of the virus.
Data from the person’s own genome can be linked to the virus genome data provided via the previously announced viral sequencing programme by the COVID-19 Genomics UK Consortium (COG-UK), a partnership of NHS organisations, UK public health agencies, the Sanger Institute and UK academic centres.
Professor Sharon Peacock CBE, Director of COG-UK, said:
This study is a fantastic example of how different parts of the UK genomics community are working together to get a full genomic picture of the spread and impact of the virus.
In COG-UK we have already sequenced over 10,000 virus genomes from patients with COVID-19. Linking this data to the patient’s own genome data in the Genomics England-GenOMICC study may provide unique insights into how the patient and virus genomes act together to influence the patient’s response to the infection and will help inform and improve our response to future outbreaks.
Professor Sir Mark Walport, Chief Executive of UK Research and Innovation (UKRI), who have given £3 million in funding to the project, said:
The UK is a global leader in the genetic analysis of disease. By applying this expertise to examine the role of genetic factors in COVID-19, including in young severely impacted patients without known underlying health issues, this study could identify important risk factors and disease mechanisms, which may lead to new diagnostic and therapeutic approaches.
Part of the overall genomic study will also focus on children and young adults severely affected by COVID-19.
The NIHR BioResource is partnering with GenOMICC and Genomics England to provide infrastructure, expertise and £1 million funding to investigate this by collecting samples from these young patients and their parents.
Professor John Bradley CBE, Chief Investigator of the NIHR BioResource, said:
The NIHR BioResource is delighted to build on our established partnership with Genomics England and work with GenOMICC to understand in particular why some children and young adults are so severely affected by COVID19.
These initiatives will enable novel insights into the virus, as well as possible human factors that influence the effects of the disease, and whether a combination of both shape outcomes for NHS patients.
Professor Dame Sue Hill, Chief Scientific Officer and SRO for Genomics at NHS England and NHS Improvement said:
This study has the potential to dramatically improve our understanding of COVID-19 – it could help us to identify whether underlying genomic differences play a part in how people react to the virus and why some people have few or no symptoms whilst others can get very ill.
I am very grateful to all the staff, patients and families who are working on and participating in this study, at what is a very challenging time.
The data that is collected during the study will also inform global strategic planning for possible later waves of the pandemic, and for new pandemics in the future.
For now, the prospect of this study’s findings should not detract from the fact that we must all continue to follow the government’s guidance, which at the moment involves staying home and staying safe.
Since genetic discoveries need very large numbers of patients, patients who have already had COVID-19 and have now recovered are invited to volunteer to take part in the study.
Over 150 participants recruited to new COVID-19 research programme
A “library” of valuable biological samples from people with COVID-19, which will help scientists globally fight the virus, has recruited its 150th participant.
The National Institute for Health Research (NIHR) BioResource began collecting samples at the end of March from patients admitted to Addenbrooke’s hospital with suspected COVID-19. Samples included blood, nasal and throat swabs, plus a mental and physical health questionnaire.
The biological samples are carefully separated, analysed and stored as part of a resource for scientists to draw upon when researching treatments, vaccinations or a deeper understanding of COVID-19.
The NIHR BioResource will now seek further participants to join the new NIHR COVID-19 BioResource cohort. All hospital patients in Addenbrooke’s and The Royal Papworth Hospital with suspected or confirmed COVID-19 are invited to take part in this essential research. NHS staff undergoing routine screening for the COVID-19 infection will also be invited to participate in the study.
Up until now, local samples have mainly been collected in Cambridge, and processed in a specialist lab in the Jeffrey Cheah Biomedical Centre. Over the next few weeks, local NIHR BioResource centres across England will be able to begin recruiting from other hospitals.
Since the initiative launched in March, the NIHR COVID-19 BioResource has collected samples from more than 150 participants, including patients with COVID-19 and NHS staff who are either asymptomatic or with mild symptoms who had been self-isolating at home as a precaution. Collection of samples from NHS staff in addition to patients allows the NIHR COVID-19 BioResource to safely collect samples from participants with the full range of symptoms experienced from COVID-19, while contributing to the essential COVID-19 screening of NHS staff.
Dr Nathalie Kingston, Director of the NIHR BioResource said: “Since the outbreak, leading experts across the world are coming together to collaborate in joint research projects to help slow down and halt the disease, the NIHR BioResource is no exception.
“Working with our current structure, we have created a new resource where we can easily recruit patients who have been diagnosed with COVID-19 and clinical staff working in the NHS. We can then track the disease progression during the participant’s recovery as well as understand any changes to their mental health. We will then be able to harness and use the information for future research trials and improve our knowledge of the disease.
“We have a special interest in enrolling patients under 40 who are admitted to hospital, to better understand their immune response. We will also be working alongside paediatrics intensive care units across the country to enrol patients under the age of 16 and their parents.
“The NIHR COVID-19 BioResource doesn’t prevent anyone from taking part in other research studies for COVID-19. There are many national research studies taking place and we need as much information as possible if we are going to tackle this disease.”
How the NIHR BioResource helps research
The NIHR BioResource is a nationwide platform that supports research in a number of health conditions. It brings patients, as well as healthy volunteers, who want to take part in research together with researchers who need volunteers to take part in studies. Currently, there are over 150,000 people with or without conditions who have consented to be approached to participate in research.
The NIHR COVID-19 BioResource offers patients diagnosed with COVID-19 and clinical staff an opportunity to provide their biological samples for the purposes of research. Healthy volunteers are also able to sign up without providing a sample but can consent to take part and will complete a health questionnaire. They will then be invited to provide their sample at a later date when restrictions are lifted and when it is safe to do so.
Researchers will use the information to support current and future research into understanding the disease, including finding new treatments and why some people experience mild symptoms but others are more serious.
Principle Investigator Professor Ken Smith from the Cambridge Institute of Therapeutic Immunology and Infectious Disease will be analysing the samples collected from Cambridge to understand how the immune responds to the virus.
Professor Smith said: “By understanding more about participants’ immune response to the virus, we hope to find out why some people get severe, and indeed life-threatening, COVID-19 while others have very mild symptoms or no symptoms at all.
“This information will help in the development of effective vaccines and may help doctors to identify people who are more at risk of severe symptoms before they are infected.”
Dr Michael Weekes, Honorary Consultant in infectious diseases, whose primary research focuses on how our cells defend themselves from viruses, is trying to identify people most at risk of severe COVID-19. Dr Weekes said: “We have been studying blood samples from participants of the NIHR COVID-19 BioResource for use with a technique called ‘proteomics’.
“This is where we analyse which proteins are present on the surface of white blood cells from patients with severe or milder forms of COVID-19. This will help us determine when a patient is admitted to hospital with COVID-19 if it is likely they will need to be treated in the intensive care unit.
“We are also looking at healthcare workers who have experienced mild symptoms of COVID-19, or even who have had the virus without any symptoms at all. Staff who have signed up to the NIHR COVID-19 BioResource have provided a small sample of blood to be analysed. This research will help us understand how our body defends itself against the virus, and identify who is most at risk of developing severe COVID-19.”
Take part without being an inpatient
People who have had mild COVID-19 symptoms or have not been affected with the virus can still get involved in research. Currently, there is no way of safely collecting biological samples from a non-hospital setting. However, people can still contact the NIHR BioResource to volunteer for research in other ways, such as taking surveys.
The NIHR COVID-19 BioResource is encouraging more participants who have been hospitalised with COVID-19 to sign up to the research programme. The more samples collected, the more chance researchers can understand the disease and discover new treatments. www.bioresource.nihr.ac.uk
Genetic analysis reveals new causes of Primary Immunodeficiency (PID)
A UK-wide research collaboration through the National Institute for Health Research (NIHR) BioResource for Rare Diseases has combined whole genome sequencing (WGS) with a statistical program called BeviMed to predict the existence of disease-causing changes in the DNA of people with Primary Immunodeficiency (PID).
PID is a severe condition with a range of symptoms, including repeated severe (and often life-threatening) infections, autoimmunity (where the body’s immune system attacks itself) and early onset of cancers. PID is challenging to diagnose and treat, but understanding the genetic cause of the condition in each individual can help to identify the most effective treatment.
In this NIHR Cambridge Biomedical Research Centre (BRC) funded study published today (06 May) in Nature, the research team sequenced the entire genetic code of 974 people with PID. The team were able to identify variations (changes) in genes already known to cause PID in almost 1 in 5 of the study participants, providing them with a genetic diagnosis for their condition.
To help identify genetic causes for the remaining participants and other patients with PID, the team used a statistical program known as BeviMed. BeviMed can be used to predict genes that may cause PID, by comparing the genomes of cases (people with PID) and controls (people without the condition). Using this technique, the team were able to identify new genes that cause PID.
The paper’s lead author, Dr James Thaventhiran, said: “The use of whole genome sequencing allows us to rapidly identify known genetic causes of immunodeficiency. The scientific advance comes from using sophisticated analytical methods to discover new genetic causes of PID. These results are important for our patients because identification of the genetic cause may allow us to prioritise the therapeutic targeting of specific immune pathways to improve their health”.
The study also provided a new insight into how multiple genetic defects can act together to cause diseases such as PID. The research team were able to identify families of patients where different combinations of common and rare genetic changes gave rise to different forms of PID, with varying symptoms and severity.
This research may also help to explain why some patients with the same form of PID experience vastly different symptoms. Professor Adrian Thrasher, a lead investigator and Consultant in Immunology based at Great Ormond Street Hospital (GOSH) explained: “Until now, the reasons for this variability have been very unclear. WGS has allowed us to map out unique combinations of genetic errors in each patient and consider how their interactions could lead to different symptoms.”
Combined analysis approaches to whole genome sequences from large numbers of patients with a rare disease type, such as PID, can provide new understanding of the genetic causes of these diseases. This is important in PID because it will improve diagnosis rates and allow more targeted treatment and advice, ultimately improving outcomes for patients.
Dr Susan Walsh, Director of the patient support group, Primary Immunodeficiency UK, said: “Knowledge is power, and we hope techniques like these become routine for future patient diagnosis and treatment. These findings are providing some PID patients with answers, ending their diagnostic odyssey, and helping define what the best treatments are for these individual patients. We look forward to hearing about and collaborating on further studies and the opportunity for more patients to take part in this important research.”
Advances in the understanding of rare disease are only made possible through programmes such as the NIHR BioResource Primary Immunodeficiency Collaboration, that brings together large numbers of people affected by the disease who are willing to take part in research with leading experts in rare diseases and immunology from across the country and the world.
“By bringing together expertise in these rare diseases from across the UK and recruiting a larger number of individuals affected by them, we hope to be able to provide more genetic diagnoses and better treatments for patients,” said Chief Investigator and Director of the Cambridge Institute of Therapeutic Immunology & Infectious Disease (CITIID), Professor Ken Smith. “At the same time, by understanding what goes wrong in the immune systems in rare cases, we hope to provide fresh insights into how the human immune system works more generally, which could ultimately benefit a much wider number of patients.”
The team have now been awarded a £4 million Collaboration Award from the Wellcome Trust to take the research forward. The new collaboration includes the NIHR BioResource and Genomics England, which, together with NIHR Biomedical Research Centres in England, will support the UK-wide consortium to expand the number of PID patients undergoing both WGS and detailed immune investigations, to further advance our ability to diagnose PID.
Professor Smith continued: “This approach allows gene discovery in adult patients without known affected family members and with complex disease – a group in which this has previously been very difficult. Its application to other rare adult diseases therefore has the potential to allow similar advances. It will be applied, for example, to a cohort-based whole genome sequencing study being planned to investigate the genetic drivers of susceptibility to severe COVID-19”.
Written by NIHR Cambridge Biomedical Research Centre
New resource to support research into COVID-19
The NIHR BioResource have launched a new resource to support research into COVID-19
As part of the NIHR BioResource, this will allow people tested in hospital for COVID-19 to participate in research by providing biological samples (such as blood, and the swab used to test for COVID-19) and answering some questions about their lifestyle and mental health.
NHS staff undergoing routine screening for COVID-19 are also being asked if they would like to participate in NIHR COVID-19 BioResource, in order to safely collect samples representing a variety of COVID-19 experiences – from those displaying none or mild symptoms to those with more severe experiences.
The samples will support current and future research – including on-going research to find new and faster ways to test patients and staff, why the virus affects people in different ways and find new treatments to treat the disease.
Locally collected samples are sent to the Cambridge Institute of Therapeutic Immunology and Infectious Disease (CITIID), where Professor Ken Smith and his team are looking in the laboratory at participants’ immune responses to the virus.
Professor Smith said: “By understanding more about participants’ immune response to the virus, we hope to find out why some people get severe and indeed life-threatening COVID-19 while others have very mild symptoms.
“This information will help in the development of effective vaccines and in the targeting of existing “repurposed” treatments. It may also help doctors to identify people at risk of progressing to severe disease, who might then benefit from early treatment.”
Director of the NIHR BioResource, Dr Nathalie Kingston said: “We have already shown the value of a BioResource to researchers in both common and rare diseases and we aim to make this new initiative an equally vital resource for COVID-19 research.
“We are already enrolling patients attending Cambridge University Hospitals but we will expand to patients at other NIHR BioResource centres across England, as soon as this is practical and permissible.
“We have a special interest in enrolling patients under 40 who are admitted to hospital, and who seem to have a different immune response. We will also be working alongside Paediatrics Intensive Care Units across the country to enrol patients under the age of 16 and their parents.”
If you are admitted to Cambridge University Hospitals with suspected COVID-19 and would like to find out more, please talk to a member of the team looking after you. It is also possible for those with mild COVID-19 symptoms to participate in COVID-19 research by joining the BioResource and completing survey-based studies. More information is available here
Good to know:
• Participants in NIHR COVID-19 BioResource may be offered opportunities to take part in further research
to help researchers understand more about COVID-19. You are free to decide if you want to take part.
• The samples and information you provide are ‘de-identified’ – this means that information that can identify you is safely and securely stored separately from your health information, and will only be used to contact you about studies you may be suitable to take part in. Researchers using the information for research cannot identify you from the information available to them.
• Joining NIHR COVID-19 BioResource does not prevent you from joining any other COVID-19 research study.
Coronavirus update – recruitment has now stopped
Updated: 17 March 2020
The Prime Minister has announced that people are being urged to work from home and avoid all non-essential travel.
The NIHR BioResource has therefore today taken the decision to no longer recruit new participants to its panel. This includes:
- The enrolment of members of the public who have expressed an interest in joining the BioResource
- The recruitment of patients with a Rare Disease, IBD, NAFLD or IMID, and through recruiting sites and clinics.
Existing BioResource participants who have been invited, or have accepted, to participate in research studies will also be notified. Apart from research studies through online questionnaires, other recall activities will be on hold until further notice.
As of today, staff members of the NIHR BioResource who are based in Cambridge are now working from home. Our ability to respond may be affected by our remote working and/or the impact of a wider COVID-19 infection. Some individual phone numbers and emails are no longer being monitored on a regular basis. Please try emailing staff members in the first instance if you need to reach any of us in particular.
Please do not hesitate to contact us on 0800 090 22 33 or firstname.lastname@example.org, if you have any query regarding the above.
Thank you for your understanding.
Please stay safe.
Nathalie Kingston, PhD
Director – NIHR BioResource for Translational Research