Many researchers have begun vital work to understand the impact of COVID-19 on all those affected by kidney disease. The results of these studies can be used to better understand how to get the right support in place for people with kidney disease during the outbreak and afterwards. It is possible to join many of these studies from home.
We have listed details of these and other studies in which you may be interested in participating. We will add to this as we hear of new research opportunities. The projects and study teams are independent of Kidney Care UK and it is best to contact the teams directly for more information about each study. All studies have received independent ethical approval.
Currently available opportunities
PERCEIVE-KTR
We're doing this study because we want to find about how people with a functioning kidney transplant think and feel about themselves. We would like to know about a Variety of topics, such as:
- How you eat, and think about food
- How kind you are to yourself when you’re going through a difficult time
- How you think and feel about your body
We want to explore whether our thoughts and emotions have an effect on our physical health.
The role of carers in wellbeing interventions for haemodialysis (HD) patients from South Asian backgrounds
To better understand the experience of those who care for South Asian HD patients and to explore similarities and differences with carers of patients who identify with a white heritage. To also explore carer perspectives on wellbeing support for their family member.
Self-management for young adults with chronic kidney disease
A person-centred, theory-based self-management intervention specific to Young Adults (YAs) living with Chronic Kidney Disease (CKD) stages 1 to 5. A Rapid Evidence Assessment (REA) and mixed-methods study.
COVIDENCE-UK study
Currently, the risk factors, adverse outcomes, impacts on mental and economic wellbeing and the natural history of COVID-19 in the UK population are largely unknown. The COVIDENCE UK Study will collect data from volunteers around the UK to answer scientific questions surrounding COVID-19.
Living Well on Haemodialysis
The aim of this study is to prepare for a trial of some new online video materials that the study team have produced which they hope can help people to live and cope better with haemodialysis.
Improving Implementation of NICE Recommendations on Planning Treatment and Care Towards the End of Life
The study seeks to understand:
- What influences the planning and coordination of treatment and care towards the end of life
- What resources and tools are currently available to support these processes
- How to improve the uptake of end-of-life care guidance
Other research opportunities
The National Institute for Health Research (NIHR) ‘Be part of research’ website lists COVID-19 research opportunities it is funding.
Oxford University is running a large study of potential treatments for COVID-19, called the RECOVERY trial. It is open to kidney patients with COVID-19.
The Join Zoe COVID Symptom Study asks people to report on their health on a daily basis via a smartphone app. This will allow the researchers to track any symptoms of COVID-19 that people are experiencing and understand what some of the early symptoms could be.
PROTECT, an existing long-term online study looking at ageing, has opened a new arm to study the impact of COVID-19 isolation on the physical and mental health of people aged over 50, and find new ways to support them.
Genomics England is working with the NHS and people who have had COVID-19 to understand whether there are genetic factors that mean that some people experience severe symptoms whilst others experience only mild symptoms.
PERCEIVE KTR
We're doing this study because we want to find about how people with a functioning kidney transplant think and feel about themselves. We would like to know about a variety of topics, such as:
- How you eat, and think about food
- How kind you are to yourself when you’re going through a difficult time
- How you think and feel about your body
We want to explore whether our thoughts and emotions have an effect on our physical health.
Study type
Online survey
Who is able to participate
Two groups of people can participate:
- People who are living with a kidney transplant with a kidney function of 15% or more (i.e. an eGFR of 15 or more)
- People who do not have any type of kidney disease (to the best of their knowledge)
Where is the study happening?
On the Leicester University website
Open and close dates of recruitment
26 July 2021 to 31 August 2022
How do I get involved?
Go to the study link on the Leicester University website
Summary
We would like to find out what sorts of things affect the health of people who have had a kidney transplant. We want to use what we find to help people who have had a kidney transplant to live happier and healthier lives.
Has the study received ethical approval? Please provide REC number.
Has received ethical approval from the University of Leicester’s Medicine and Biological Sciences Research Ethics Committee (Ref: 26219-rjl48-ls:healthsciences).
Who is funding the study?
Economic and Social Research Council
Self-management for young adults with chronic kidney disease
A person-centred, theory-based self-management intervention specific to Young Adults (YAs) living with Chronic Kidney Disease (CKD) stages 1 to 5. A Rapid Evidence Assessment (REA) and mixed-methods study.
This research aims to address the current CKD self-management by examining the key elements of the CKD self-management interventions identified in the existing literature (phase 1 – REA literature review), as well as, identifying existing self-management behaviours among YAs living with CKD through collection of qualitative (individual interviews and/or focus groups) and quantitative (questionnaire-based study) data (phase 2).
The findings from both phases will be beneficial in informing future research in the self-management interventions field, particularly for YAs with CKD stages 1-5. It is also aimed that the findings from this first stage (phase 1 and 2) will inform the development of an appropriate person-centred, theory-based self-management intervention for YAs living with CKD stages 1 to 5 (phase 3). Finally, the research may also include phase 4, which will aim to assess the feasibility, accessibility, and potential effectiveness of the proposed self-management intervention through collection of qualitative and quantitative data.
Study type
Mixed-methods study
Who is able to participate?
4 groups of participants:
Young adults (males and females, between 18 to 35 years of age, diagnosed with CKD stages 1 to 5), their parents/guardians, caregivers, and health and social care professionals.
Where is the study happening?
Participants will be able to choose to complete the questionnaires at home either online or via pen and paper. Dependent on COVID-restrictions, they could also complete the questionnaires either at the Kidney Wales office in Cardiff or the Swansea University Singleton campus.
Participants may be invited to take part in a focus group or individual interview, depending on their preference. This could be from home (telephone or online) or it could also take place either at the Kidney Wales office in Cardiff or the Swansea University Singleton campus. However, if they do not wish to take part in the interviews, they can still complete the above-mentioned questionnaires.
Open and close dates of recruitment
Up to 6 months
Summary
This research is a multi-phase study involving four phases. Phases 1 involves Rapid Evidence Assessment (REA) literature review to establish key elements of the existing CKD self-management interventions. Phase 2 (the current study) involves the collection of quantitative data (questionnaire-based study) and qualitative data (a focus group or individual interview). Phase 2 is conducted in order to identify the gaps in self-management interventions for YAs living with CKD stages 1 to 5, which need to be addressed. Whereas, phase 3 involves the development of a person-centred, theory-based self-management intervention for YAs living with CKD stages 1 to 5, based on findings from phase 1 and 2. Finally, phase 4 aims to assess the feasibility, accessibility, and potential effectiveness of the proposed self-management intervention through collection of qualitative and quantitative data.
Has this study received ethical approval?
Yes. ics Committee name: HRA and Health and Care Research Wales (HCRW)
Reference number: 19/EM/0339.
Lead investigators
- Paula Krawiec (researcher)
- Professor Jaynie Rance (lead supervisor)
- Professor Paul Bennett (2nd supervisor)
Who is funding the study?
Swansea University (50%) and Kidney Wales Foundation (50%)
COVIDENCE-UK study
Aim of the study
Currently, the risk factors, adverse outcomes, impacts on mental and economic wellbeing and the natural history of COVID-19 in the UK population are largely unknown. The COVIDENCE UK Study will collect data from volunteers around the UK to answer scientific questions surrounding COVID-19.
Study type
Online questionnaire study
Who is able to participate?
You can take part if you are 16 or over and living in the UK.
Where is the study happening?
It is all done online from your own home
Open and closing dates of recruitment
The study will be ongoing for five years and you can sign up at anytime, although the earlier you sign-up the more valuable data can be collected.
How do I get involved?
You can sign up on the study website
Summary
The COVIDENCE UK national research study is designed to find out whether people with conditions such as kidney disease may be at increased risk of coronavirus disease. The researchers are looking to recruit a broad mix of people from all over the UK, including those who have NOT had coronavirus infection, and those who HAVE already had proven or suspected coronavirus infection.
The study will involve filling in an on-line questionnaire to collect information about your lifestyle, diet, longstanding conditions and prescribed treatment. Completion takes 30-60 minutes. After that, you will be contacted monthly via email to report possible symptoms of coronavirus disease. The data you provide will be linked to your medical records, to allow the study team to investigate whether coronavirus infection may affect long-term health.
Has this study received ethical approval?
This research has been ethically approved by Leicester South Research Ethics Committee (ref 20/EM/0117).
Lead investigators
Professor Adrian Martineau – Queen Mary University of London
Who is funding the study
Living Well on Haemodialysis
Aim of the study
The aim of this study is to prepare for a trial of some new online video materials that the study team have produced which they hope can help people to live and cope better with haemodialysis.
Study type
This is a mixed-methods study involving questionnaires and focus groups.
Who is able to participate?
To take part in this study, participants must be over 18, have received in-centre haemodialysis for at least 90 days in the last two years (even if presently on home haemodialysis), be able to converse in English, have good internet access, and be able to commit to a four-week programme.
Where is the study happening?
This study is taking place online and participants can take part from their own homes or any suitable location provided they have internet access.
Open and closing dates of recruitment
Recruitment is open now from November 2021 to December 2021
How do I get involved?
To express an interest in taking part in this study, please go to: https://tinyurl.com/LivingWellOnHD
Summary
Researchers at the University of Derby and the University of Nottingham are looking for people to take part in a trial of newly developed online materials designed to help people live well on dialysis. The materials consist of a structured programme of online films based on an approach called ‘Acceptance and Commitment Therapy’ (ACT). ACT is used to help people in difficult, stressful situations cope better with the challenges they face and identify the things in life they value most, to take actions to improve their quality of life. The materials we are trialling were carefully prepared in a previous project to adapt them specifically for people receiving renal dialysis. The study will involve completing some questionnaires before and after the trial, and there will also be a focus group to discuss and explore participants’ experiences.
Participants will be required to spend about an hour each week for four-weeks, watching short online videos and practising the associated activities and exercises. They will also have the opportunity to take part in an hour long focus group afterwards.
Participants who complete all stages of the trial will receive a £30 Amazon voucher as a gesture of appreciation for their time and effort.
Has this study received ethical approval?
This study has received ethical approval from the University of Derby Human Sciences Research Ethics Committee (Reference: 46-1819-Jep) and by the North East – Newcastle and North Tyneside 2 Research Ethics Committee (REC Reference: 19/NE/0218; IRAS ID 267104).
Lead investigators
The lead investigators for this study are:
- Professor James Elander – University of Derby
- Ms Romaana Kapadi – University of Derby
- Ms Carol Stalker – University of Derby
- Mr Morten Arborg – University of Derby
- Professor Kathryn Mitchell – University of Derby
- Dr Emma Coyne – Nottingham University Hospitals NHS Trust
- Professor Maarten Taal – University of Nottingham
- Professor Nick Selby – University of Nottingham
Who is funding the study
This study is funded by grants from the Kidney Care UK and British Renal Society Joint Grants Partnership (Ref 18-005) and the University of Derby’s research investment fund.
Links for more information
For more information about this study, please go to: https://tinyurl.com/LivingWellOnHD
Or contact the research team on: [email protected]
Improving Implementation of NICE Recommendations on Planning Treatment and Care Towards the End of Life
Aim of the study
The study seeks to understand
- What influences the planning and coordination of treatment and care towards the end of life
- What resources and tools are currently available to support these processes
- How to improve the uptake of end-of-life care guidance
Study type
Survey-based study.
Who is able to participate?
People approaching the end-of-life or interested in planning for end of life, people important to them such as family or carers, healthcare, and social care staff
Where is the study happening?
Online
Open and closing dates of recruitment
Early December to end of January
How do I get involved?
The online survey can be accessed here: https://www.thiscovery.org/end-of-life-care/
Summary
We are exploring what influences planning for treatment and care towards the end of life by collecting the views and experiences of people from various groups.
Has this study received ethical approval?
PRE.2021.070, Cambridge Psychology Research Ethics Committee
Lead investigators
Professor Graham Martin, The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge
Who is funding the study
This study is organised by The Healthcare Improvement Studies Institute at the University of Cambridge.
Links for more information
https://www.thiscovery.org/end-of-life-care/or email questions to the project team at [email protected]
Other research opportunities
The National Institute for Health Research (NIHR) ‘Be part of research’ website lists COVID-19 research opportunities it is funding.
Oxford University is running a large study of potential treatments for COVID-19, called the RECOVERY trial. It is open to kidney patients with COVID-19.
The Join Zoe COVID Symptom Study asks people to report on their health on a daily basis via a smartphone app. This will allow the researchers to track any symptoms of COVID-19 that people are experiencing and understand what some of the early symptoms could be.
PROTECT, an existing long-term online study looking at ageing, has opened a new arm to study the impact of COVID-19 isolation on the physical and mental health of people aged over 50, and find new ways to support them.
Genomics England is working with the NHS and people who have had COVID-19 to understand whether there are genetic factors that mean that some people experience severe symptoms whilst others experience only mild symptoms.
The role of carers in wellbeing interventions for haemodialysis (HD) patients from South Asian backgrounds
Aim of the study
- To better understand the experience of those who care for South Asian HD patients and to explore similarities and differences with carers of patients who identify with a white heritage.
- To explore carer perspectives on wellbeing support for their family member.
Study type
Qualitative: 1-1 Interview
Who is able to participate?
Carers of patients receiving HD who are themselves over the age of 18 years and identify with either a South Asian or white ethnicity.
Where is the study happening?
A one-to-one interview will be carried out remotely via telephone or on an online video conferencing platform as per carer preference. The interview will be carried out by (1) either a researcher from a South Asian background and if you prefer either in Gujarati, Urdu or Punjabi, or (2) by a member of the research team in English.
Open and close dates of recruitment
Open now until 3rd January 2022.
How do I get involved
If you are willing to contribute your views, please contact us and we will be able to provide you with further information.
Researcher: Dr Emily Beadle
Email: [email protected]
If you do decide to take part, as well as receiving the study information sheet, you will be asked to sign a consent form. This is just so that we can be sure that you have understood the information about the study and your role as a participant. Agreeing to join the study does not mean that you have to complete it.
The researcher will then arrange a convenient time and date with you for the interview. During the interview you will be asked questions related to your role as a carer, what support you think is useful for HD patients and you yourself, and we will also seek your views on how care needs may have been affected by the pandemic.
With your permission, the interview will be recorded to help with transcription for data analysis. The recordings and all transcripts will be stored securely and deleted upon completion of the study. Only anonymised transcripts may be retained for up to 5 years.
Summary
Carers play an important role in the health and wellbeing of kidney patients. In this research, we are interested to learn more about the experiences of carers of family members who are receiving haemodialysis (HD), particularly how this role may have changed over the COVID-19 pandemic. We also want to find out more about carers views on the wellbeing support needs of their family member, and how they might themselves be involved in interventions designed to help.
This study will provide important knowledge that will be taken on board in our work that focuses on the development of interventions to support psychological wellbeing for HD patients.
The study involves 1-1 interviews. We are particularly inviting carers from South Asian backgrounds who identify as Gujarati, Punjabi or Pakistani to take part. We are also keen to invite carers from white ethnicities to contribute too so that we can explore how carer experiences and views are similar and where they differ.
South Asian carers can be helped to take part in Gujarati, Punjabi or Urdu as per their preference. All carers are able to take part in English.
We will find out key themes within the data and use them to feed into the co-design with patients and carers of an intervention that feels culturally responsive to the needs of patients and their families.
Has this study received ethical approval? Please provide REC number.
This study has received ethical approval by: The University of Hertfordshire Health, Science, Engineering and technology Ethics Committee with Delegated Authority.
The UH protocol number is LMS/SF/NHS/02917
The study also has ethics approval from the REC when recruitment of carers was through the NHS (though does not apply here): 18/NW/0433
Lead investigators
Dr Shivani Sharma, [email protected] (and Professor Ken Farrington).
Who is funding the study?
The British Renal Society and British Kidney Patients Association