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Patient Newsletter ISSUE 4

Message from Professor Simon Davies, BISTRO’s Chief Investigator

We live in strange times. Many of you will be wondering how the Corona

Virus will affect your lives in the coming weeks. Undoubtedly it will affect us

all.

We know this will be a challenge for research studies in all sorts of medical

settings as the clinical pressures build up. We will be working with your

doctors and nurses to do their very best under these circumstances,

recognising that some flexibility will be required. BISTRO continues to be a

very successful and important trial and I can assure you that remaining in the trial will not

affect your care, whatever your dialysis unit’s plans are to cope with these pressures.

If you have any questions at all about how these exceptional circumstances might affect your

participation, please do not hesitate to ask your own doctors and nurses – or our wonderful

Patient Advisory Group (contact: bistro@devicesfordignity.org.uk).

My best wishes to you and thanks for your continued support,

Simon Davies

Dear BISTRO participant:

Welcome, inside this issue: A message from Professor Simon Davies BISTRO Chief Investigator; we meet the teams at the centre responsible for delivering the BISTRO study; and a specific feature about holiday dialysis. We hope you enjoy reading it

1) 439 patients have entered the trial

2) Over 2800 urine collections submitted so far

3) Over 2100 BIM readings completed so far.

4) 186 active participants providing blood & urine samples.

5) 40 participants have reached the endpoint (urine output stopped or very low) are continuing completion of question-naires

6) 27 patients have completed the 24 month follow up.

7) 46 patients have received Transplants and left the study

8) 8 participants have achieved recovery of kidney function

9) 2 patients that have transferred to Home HD have continued in the study

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Meet the BISTRO team

BISTRO relies on the collaboration of a wide range of individuals, covering many skills & abilities. Meet some of the team delivering BISTRO….

The team co-ordinating the study & providing support. Prof. Simon Davies (12) - Leader of

the study, Stephanie Stevens (13) - Study Co-Ordinator, David Coyle (3) - Expert Patient &

Chair of the Patient Advisory Group, Dr Nancy Fernandes da Silva (5) - Trials Manager, Sarah

Bathers (14) - Senior Trials Manager at Keele University.

The analysis team : Prof. Julius Sims (15) - Healthcare Research at Keele University,

responsible for statistical modelling design & data analysis. Dr Lazaros Andronis (8) - Lecturer

in Health Economics at Warwick University, leading the analysis of the health economics

benefit and Dr Ivonne Solis-Trapala (11) at Keele University.

The bio-impedance experts who designed and support the research approach for

measuring & collecting urine and blood samples: Dr David Keane (1), Dr Lizzie Lindley (6) -

Leeds Teaching Hospitals NHS Trust, Dr Jamie Macdonald (4) - Bangor University.

Some of the consultant nephrologists & other specialists leading the research locally:

Prof. Sandip Mitra (2) - Manchester University Hospitals NHS Foundation Trust, Prof. Ken

Farrington (10) - East & North Hertfordshire NHS Trust, Prof. Paula Ormandy (9) - Salford

University and Dr Trevor Allen (7) - West Midlands Clinical Research Network.

PLUS, ALL the wonderful, hardworking research nurses & nephrologists not in the pictures

spread around the UK.

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3 4

5

6 7

1

9

2

11

12 13 10 14

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Dialysis on holiday ?

Your first holiday on Dialysis ?

The National Kidney Federation have produced a really

patient friendly leaflet.

“The Complete Guide to Holiday Dialysis”. The guide covers

holidays in the UK and abroad, holiday companies, travel

insurance and a useful list of dialysis sites.

https://www.kidney.org.uk/holiday-guide-for-kidney-patients

This page was written before the Corona Virus reached Europe. We have decided to include this page as readers may find the infor-mation & online links useful in the future.

KidneyCareUK provide grants to

individuals and families towards the cost of a

basic holiday in the UK or overseas. The grant

can be used to cover the total cost if it is

modest or it can be used as a contribution

towards the final cost.

https://www.kidneycareuk.org/contact-us/

Kidney Care Dialysis Freedom

are a non-profit company,

funded by Kidney Care UK,

who help dialysis patients access dialysis

away from base hospital via the UK Dialysis

Swap Scheme, and give advice and

assistance to patients when booking their

holidays.

https://dialysisfreedom.co.uk/

European Health Insurance Card (EHIC)

An EHIC gives you the

right to access state

provided healthcare

during a temporary stay

in another EU country.

An EHIC is not a replacement for travel in-

surance. Make sure you have both before

you travel.

Disclaimer: PAG are not experts in Holiday Dialysis, the contents & web links on this page are

provided for information only. PAG do not endorse any of the services mentioned.

Dialysis in the UK

Dialysis in Europe

The current NHS advice is:

“There will be no changes to healthcare

access for UK nationals visiting or living

in the EU, before 31

December 2020. You

can continue to use your

EHIC during this time, as you did before.

For a full explanation go to:

https://www.nhs.uk/using-the-nhs/

healthcare-abroad/apply-for-a-free-ehic-

european-health-insurance-card/

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Patient Support

Checkout the BISTRO webpage dedicated to participants on the trial (see below)

If you are planning a holiday, remember to tell your research nurse when you will be away.

And finally… If you have any suggestions or questions for our next Newsletter we would love to hear from you. Please email us at: bistro@devicesfordignity.org.uk.

Funding Acknowledgement: This project was funded by the National Institute for Health Research

Health Technology Assessment (HTA) Programme (project number 14/216/01, www.nihr.ac.uk).

Department of Health Disclaimer: The views and opinions expressed therein are those of the au-

thors and do not necessarily reflect those of the Health Technology Assessment (HTA) Programme,

NIHR, NHS or the Department of Health.

BISTRO web page dedicated to patient participants

The BISTRO management team & Patient Advisory Group have jointly developed a website page dedicated to participants on the trial.

We encourage patients to check out the webpage which contains: FAQ’s, Jargon Buster and useful links for patients wishing to learn more about living with kidney failure.

You will also find previous Newsletter editions on the website and a link to PAG if you wish to make contact.

Visit: www.keele.ac.uk/bistro

Click on “Patient Advisory Group” in the left hand column

Want to know about other Kidney related research studies taking

place in the UK ?

If you would like to read about other studies about Kidney Disease, in your region or nationally, checkout the National Institute of Health Research (NIHR) website.

https://bepartofresearch.nihr.ac.uk/