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
- Self-management for young adults with chronic kidney disease
- Assessing and reducing the impact of COVID-19 on the wellbeing of people with chronic kidney disease (CKD) receiving in-centre haemodialysis during the outbreak
- Pregnancy choices with kidney disease
- CONVINCE
- COVIDENCE-UK study
- Other research opportunities
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-care professionals (HCPs).
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%)
Relevant pictures/logos
Advertising poster will be provided as soon as it's designed.
Assessing and reducing the impact of COVID-19 on the wellbeing of people with chronic kidney disease (CKD) receiving in-centre haemodialysis during the outbreak
The aim of the study is to improve support for people with chronic kidney disease (CKD) who need in-centre haemodialysis in the UK during the COVID-19 outbreak.
Study type
This is a mixed-methods longitudinal study involving online questionnaire surveys and optional telephone interviews at baseline and 3-month and 6-month follow-ups.
Who is able to participate?
To take part you must be over the age of 18, currently receiving in-centre haemodialysis treatment, currently living in the UK, and able to understand and speak English.
Where is the study happening?
Across the UK via online questionnaire surveys and optional telephone interviews all done from your own home.
Open and close dates of recruitment
Open now: January 2021 to Autumn 2021
How do I get involved?
Please access the weblink below for more information about the study and guidance on how to take part:
https://derby.qualtrics.com/jfe/form/SV_6zYJmAIsg6RQoUl
Summary
We are looking for people currently having in-centre haemodialysis to take part in a research study to improve support for people with chronic kidney disease (CKD) who need hospital dialysis in the UK during the COVID-19 outbreak. The study involves completing an online questionnaire survey about experiences of in-centre dialysis during the COVID-19 outbreak.
People who complete the survey will then have the option to take part in a telephone interview where one of the researchers will speak with them to gain a more in-depth insight into the responses they gave in the questionnaire and identify what support would be useful and how it should be delivered. We will also conduct follow-up surveys and interviews in 3 and 6 months’ time to find out how CKD patients are managing as the outbreak develops, and we will work with renal organisations to help inform the content and delivery of additional online information, advice and psychological support based on the study findings.
Has this study received ethical approval?
This research study has been ethically approved by the University of Derby Health, Psychology and Social Care Research Ethics Committee (Reference: ETH1920-2748).
Lead investigators
- Professor James Elander, University of Derby
- Ms Romaana Kapadi, University of Derby
- Ms Carol Stalker, University of Derby
- Mr Ian Danton, University of Derby
- Professor Nick Selby, University of Nottingham
- Professor Maarten Taal, University of Nottingham
Who is funding the study?
No funding has been received for this research study.
For further information or to discuss this research study please contact either Romaana Kapadi ([email protected]) or James Elander ([email protected]).
*Please note that the research team are currently working remotely and are therefore only available via email.
Pregnancy choices with kidney disease
Engaging and supporting women with Chronic Kidney Disease with pre-conception decision-making (including their experiences of COVID 19): A mixed-methods study
The aim of this study is to improve support for women with CKD with the complex choices they need to make in relation to pregnancy by:
- Identifying needs and preferences of women of reproductive age with CKD by improving our understanding of how women make decisions about pregnancy, and investigating associations between pregnancy, health, well-being and psychosocial contexts
- Constructing a theoretical model for decision making in relation to pregnancy, an essential first step in the development of a pre-conception ‘Shared Decision Making’ (SMD) intervention for use in clinical practice.
Study type
Mixed methods study utilising surveys and in-depth qualitative interviews, ongoing stakeholder consultation activities with patient and public representatives and a multi-disciplinary intervention development group.
Who is able to participate?
All women with kidney disease who are on dialysis or have a transplant aged between 18 and 50 and living in the UK
Where is the study happening?
Across the UK, via an online survey available at the Cardiff University website
Open and close dates of recruitment
Open now: September 2020 to Spring 2021
How do I get involved
By completing a short online survey. The questions will be tailored to you depending on your current knowledge, needs and circumstances so rest assured your opinion and experience matters. The survey asks about things like; your kidney disease, current circumstances, choices about pregnancy, health and wellbeing, communication with healthcare professionals, information needs, impacts of COVID 19, and your support networks. The whole survey will take approximately 20-30 minutes. Once you have completed the survey, you will be taken to a page with information on organisations and resources that may be of help.
We will also be inviting a small number of women to take part in an informal interview over the phone or online video call. If the answer to this is yes, you can enter your contact details and we may get in touch to arrange to talk at a time and in a way that suits you.
You can also enter your details if you want to be kept updated about the study findings, news and other opportunities to take part in research on this topic.
Summary
Women who have Chronic Kidney Disease (CKD) face complex decisions about becoming pregnant. We know very little about these women’s knowledge of the ways kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and understanding how they weigh up the pros and cons of starting a family whilst living with kidney disease.
In this study, we want to better understand the key factors that influence decision making about pregnancy from women’s perspectives, such as the impact of pregnancy on their health and of their kidney on their pregnancy, pressure from family, risk of passing on an inherited condition, miscarriages, anxiety and depression, feelings of shame and guilt, burden on relationships, and social care needs. We will carry out an online survey and one-to-one interviews with women of childbearing age across Wales, who we can follow up in future research. We will work closely with the Multi-Disciplinary Teams (MDTs) across Wales, including doctors, nurses, midwives, social workers and psychologists, who deliver care and education to women with CKD about family planning, to learn about how they support women with their decision making.
The information we collect will be used to help us design a ‘Shared Decision Making’ (SDM) intervention. Shared Decision Making is a process where Professionals and patients work together to come to informed decisions about future treatment. Health professionals share the best available evidence in an easy to understand way. Patients are encouraged to share what matters most to them in terms of their priorities, concerns, lifestyle, personal circumstances, and preferences. Encouraging Shared Decision Making could help engage women and better support them with the complicated and emotional decisions they need to make about family planning and pregnancy.
Has this study received ethical approval? Please provide REC number.
Yes. REC Number: 20/WA/0157
Lead investigators
Dr Sian Griffin Consultant Nephrologist and Transplant Physician, Cardiff and Vale University Heath Board,
& Dr Leah Mc Laughlin Bangor University, School of Health Sciences, Wales Kidney Research Unit
Who is funding the study?
The Kidney Patient Research Partnership, Kidney Care UK & BRS Joint Grants Programme 2019.
CONVINCE - The comparison of high-dose Haemodiafiltration (HDF) versus Haemodialysis (HD)
The CONVINCE study aims to determine the best possible dialysis treatment by comparing high-dose HDF versus conventional high-flux HD treatment by carrying out a prospective randomised controlled clinical trial addressing clinical endpoints, quality of life and a cost-utility analysis.
Study type
Clinical trial
Who is able to participate?
A subject must meet ALL of the following criteria in order to participate:
- Signed and dated written Informed Consent Form obtained from the subject or his/her guardian or in accordance with local regulations.
- Male or female aged ≥ 18 years.
- Diagnosed with ESKD.
- Established on haemodialysis for 3 months or longer.
- Likely to achieve high-dose HDF (≥23 L in post-dilution mode), according to the protocol (Appendix I).
- Willing to have a dialysis session with duration of ≥ 4 hours, three times a week.
- Understands study procedures and is able to comply.
Where is the study happening?
Countries within Europe
Open and close dates of recruitment
November 2018; early 2021
How do I get involved?
- study progress can be viewed on the Convince Trial website
- some UK centres are taking part in the study
- and you could ask your local centre whether they are one of the sites.
Summary
Information about end-stage kidney disease
End-stage kidney disease
End stage kidney disease (ESKD) ranks among the most severe chronic, non-communicable diseases world-wide.
Patient quality of life and outcomes
Despite improvements in dialysis machine and dialyzer technology, and the introduction of newer drugs, the survival of patients with kidney failure treated by dialysis remains high, and improvement in survival has not improved as much when compared to other chronic conditions, including some of the more common cancers.
In addition, many kidney dialysis patients feel tired and lack energy. This impacts on their quality of life, and the rates of self-reported depression are increased in kidney dialysis patients.
Dialysis
Over the past decade, an alternative to standard haemodialysis (HD) has become available ‒ haemodiafiltration (HDF). HDF uses the same dialyser, and dialysis water, but differs from standard HD, as the dialysis machine takes more fluid away from the blood as it passes through the dialyser, but then replaces this fluid by returning the same amount with dialysis water, so the additional amount of fluid removed is balanced by the fluid replaced.
HD removes water soluble toxic compounds that accumulate in patients with kidney failure mainly by diffusion, and a smaller amount by convection. HDF differs by increasing the amount removed by convection. Diffusion is very efficient at removing small molecules, but not so good at removing larger molecules, whereas convection is more efficient at removing larger molecules.
Although on one hand HDF improves the range of water-soluble toxic compounds removed, unlike the healthy kidney, neither HD nor HDF can offer selective removal of molecules, so both treatments can potentially lead to the loss of important molecules, such as vitamins and some proteins. So, although HDF increases the range of water-soluble toxic compounds removed, it could also lead to an increased loss of important molecules.
Studies on Haemodialysis & Haemodiafiltration
There have been several studies comparing HD and HDF, but many of these have been too small to be able to come to any firm conclusion as to whether HD and HDF are equivalent treatments, or one is better than the other. Statisticians have tried to combine these studies to get enough patients to compare HD and HDF, but once again these analyses have failed to demonstrate a difference. However, the studies included in these analyses often differ, so making comparisons difficult.
As such, there is current uncertainty as to whether HDF offers any benefit over standard HD, or whether treatments are equivalent, or if HD is better for patients than HDF.
The CONVINCE study has been designed to answer whether HD or HDF offers patients a better treatment, or whether treatments are equivalent, by enrolling a large number of kidney dialysis patients, currently dialysing in Europe.
The CONVINCE study will collect information from patients about quality of life, as well as information about hospital admissions and patient survival.
Results from the CONVINCE study will be used to:
Develop best practises and new guidelines for doctors and dialysis centres on the most effective and efficient type of dialysis for patients with kidney failure.
Has this study received ethical approval?
13/04/2018 candidate number 28748
Netherlands Trial register (NTR) 7138
Info on Trial Register website
Lead investigators
- Peter J. Blankestijn, University Medical Center Utrecht
- Mark Woodward, The George Institute for Global Health, Oxford
- Andrew Davenport, University College of London
- Diederick E. Grobbee, Julius Clinical
- Bernard Canaud, Fresenius Medical Care Deutschland GmbH
- Fernando Macario, Diaverum Renal Services Group
- Giovanni Strippoli, University of Bari Aldo Moro
- Claudia Barth, B. Braun Avitum AG
- Mathias Rose, Charité Universitätsmedizin Berlin
Who is funding the study?
European Union's Horizon 2020 research and innovation programme
More information
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
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.