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SPEAK study website – information and updates

Project lead:
Dr Alexander Hamilton, Tony Wing Clinical Research Fellow, University of Bristol, alexander.hamilton@bristol.ac.uk

The SPEAK study is a research study funded by Kidney Research UK and Kidney Care UK, and part of the CRN portfolio.

speak study logo

This study has now closed to recruitment in the UK.

About the SPEAK study (for patients)
About the SPEAK study (for clinicians)
SPEAK study timeline
Site participation in the SPEAK study
Recruitment to the SPEAK study


 

About the SPEAK study (for patients)

– Who?

16 – 30 year olds with a kidney transplant or on dialysis, in the UK.

– What?

The SPEAK study is the first national survey of young adults on kidney replacement therapies. It is to investigate the impact of permanent kidney failure of the lives of young people in the UK. It has been funded by Kidney Care UK and Kidney Research UK.

– Why?

This study is needed because the outcomes for these young adults are not well studied.

Young adulthood is an important time. It involves becoming independent in life, completing education, establishing careers and families and taking responsibility for your own healthcare.
About 80% of this group will have a kidney transplant, and we know that being aged 17-23 dramatically increases the risk of losing a transplant.
Even though most kidney patients move to adult services at 18, brain growth and development continues until your mid-20s.

Healthcare services for young adult kidney patients vary across the UK. The SPEAK study is needed to tell us how we need to change services to completely address all the needs of a young adult kidney patient. It will also give future patients a much clearer idea about the different ways in which having kidney failure affects your life.

– How?

The SPEAK survey is online. It takes 30-45 minutes to do, depending on your reading level.

It asks about your household, school and/or job and earnings. It also asks about your feelings towards different ways your illness affects your life, and what your lifestyle is like.

You won’t be asked any questions about your kidney disease or treatment. This is because we will link the information from the survey to data from the UK Renal Registry. This collects data from everybody on kidney replacement therapies in the UK. Doing this will allow us to see what patterns there are between different groups of people.

We are asking if we may contact you again in the future. This is to see how your responses change as you age.

– When?

The study ran from 2015 to 2017 and the data is currently being analysed.

– In summary . . .

The SPEAK study will be a nationwide study with simple involvement for patients and kidney units. It will give the first comprehensive data on a really important area about which little is known. It will provide a great opportunity for young people with kidney disease to get involved in research.

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About the SPEAK study (for clinicians)

– Why is this study needed?
The long term social and medical outcomes for young adults in the UK on renal replacement therapy (RRT) have not been comprehensively studied, and consequently there is little to inform provision of services for younger patients, or the ability to identify which groups might be at higher risk of an adverse outcome.
Registry data is incomplete for those aged 16-18 years on RRT. This study will allow identification of all RRT patients, bridging this gap and reporting on all patients.

– Who is running it?
Chief Investigator: Dr Alexander Hamilton, an adult nephrology trainee and Tony Wing Clinical Research Fellow, with a grant funded by the Kidney Care UK and managed by Kidney Research UK, based at the University of Bristol and UK Renal Registry.
PhD supervisors:
Dr Fergus Caskey (UK Renal Registry and Consultant Nephrologist, North Bristol NHS Trust),
Dr Carol Inward (Paediatric Nephrologist, Bristol Royal Hospital for Sick Children),
Prof Yoav Ben-Shlomo (Professor of Social Medicine, University of Bristol).

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SPEAK study timeline

      • August 2014 – start of project
      • February 2015 – finalisation of survey tools
      • March 2015
        • piloting of survey
        • 14/03/15 REC form submitted
      • April 2015
        • 21/04/15 REC review
        • 22/04/15 Provisional outcome granted from REC
      • June 2015
        • 04/06/15 Favourable opinion granted from REC
        • 16/06/15 R&D form submitted
      • July 2015
        • 21/07/15 Study confirmed eligible to receive NIHR Clinical Research Network (CRN) support
      • August 2015
        • 25/08/15 Lead R&D approval granted (North Bristol NHS Trust)
        • 27/08/15 Full sponsorship granted by the University of Bristol
      • September 2015
        • 02/09/15 First patient recruited in Southmead Hospital, Bristol
      • October 2015
        • 09/10/15 Local approval granted for NHS Fife
        • 21/10/15 Local approval granted for Royal Cornwall Hospitals NHS Trust
        • 27/10/15 Local approval granted for Barts Health NHS Trust
      • November 2015
        • 05/11/15 Local approval granted for Hull and East Yorkshire Hospitals NHS Trust
        • 09/11/15 Local approval granted for Southern Health and Social Care Trust (Northern Ireland)
        • 12/11/15 Local approval granted for Doncaster and Bassetlaw Hospitals NHS Foundation Trust
        • 13/11/15 Local approval granted for The Shrewsbury and Telford Hospital NHS Foundation Trust
        • 13/11/15 Local approval granted for Cardiff and Vale University Health Board
        • 16/11/15 Local approval granted for Birmingham Children’s Hospital NHS Foundation Trust
        • 26/11/15 Local approval granted for Lancashire Teaching Hospitals NHS Foundation Trust
        • 26/11/15 Local approval granted for University Hospitals Coventry and Warwickshire NHS Trust
        • 30/11/15 Local approval granted for NHS Dumfries and Galloway
        • 30/11/15 Local approval granted for Royal Devon and Exeter NHS Foundation Trust
      • December 2015
        • 01/12/15 Local approval granted for Dorset County Hospital NHS Foundation Trust
        • 02/12/15 Local approval granted for Plymouth Hospitals NHS Trust
        • 09/12/15 Local approval granted for Colchester Hospital University NHS Foundation Trust
        • 10/12/15 Local approval granted for Basildon and Thurrock University Hospitals NHS Foundation Trust
        • 10/12/15 Local approval granted for North Cumbria University Hospitals NHS Trust
        • 10/12/15 Local approval granted for NHS Highland
      • January 2016
        • 05/01/16 Local approval granted for Newcastle upon Tyne Hospitals NHS Foundation Trust
        • 05/01/16 Local approval granted for Imperial College Healthcare NHS Trust
        • 07/01/16 Local approval granted for NHS Tayside
        • 08/01/16 Local approval granted for Portsmouth Hospitals NHS Trust
        • 15/01/16 Local approval granted for Derby Teaching Hospitals NHS Foundation Trust
        • 18/01/16 Local approval granted for NHS Ayrshire and Arran
        • 20/01/16 Local approval granted for Southend University Hospital NHS Foundation Trust
        • 20/01/16 Local approval granted for The Royal Liverpool and Broadgreen University Hospitals NHS Trust
        • 22/01/16 Local approval granted for Abertawe Bro Morgannwg University Health Board
      • February 2016
        • 03/02/16 Local approval granted for Royal Berkshire NHS Foundation Trust
        • 05/02/16 Local approval granted for South Tees Hospitals NHS Foundation Trust
        • 05/02/16 Local approval granted for Nottingham University Hospitals NHS Trust
        • 11/02/16 Local approval granted for Gloucestershire Hospitals NHS Foundation Trust
        • 11/02/16 Local approval granted for Norfolk and Norwich University Hospitals NHS Foundation Trust
        • 15/02/16 Local approval granted for Brighton and Sussex University Hospitals NHS Trust
        • 16/02/16 Local approval granted for St George’s University Hospitals NHS Foundation Trust
        • 19/02/16 Local approval granted for King’s College Hospital NHS Foundation Trust
        • 23/02/16 Local approval granted for Heart of England NHS Foundation Trust
        • 23/02/16 Local approval granted for Salford Royal NHS Foundation Trust
      • March 2016
        • 01/03/16 Local approval granted for Bradford Teaching Hospitals NHS Foundation Trust
        • 03/03/16 Local approval granted for Mid Essex Hospital Services NHS Trust
        • 10/03/16 Local approval granted for NHS Grampian
        • 10/03/16 Local approval granted for Sheffield Teaching Hospitals NHS Foundation Trust
        • 18/03/16 Local approval granted for Aintree University Hospitals NHS Foundation Trust
        • 18/03/16 Local approval granted for Belfast Health and Social Care Trust
        • 22/03/16 Local approval granted for York Teaching Hospital NHS Foundation Trust
        • 31/03/16 Local approval granted for East Kent Hospitals University NHS Foundation Trust
      • April 2016
        • 12/04/16 Local approval granted for University Hospital Southampton NHS Foundation Trust
        • 19/04/16 Local approval granted for The Ipswich Hospital NHS Trust
        • 22/04/16 Local approval granted for University Hospitals Bristol NHS Foundation Trust
        • 25/04/16 Local approval granted for Cambridge University Hospitals NHS Foundation Trust
      • May 2016
        • 11/05/16 Local approval granted for City Hospitals Sunderland NHS Foundation Trust
        • 12/05/16 Local approval granted for NHS Lothian
        • 19/05/16 Local approval granted for The Royal Wolverhampton NHS Trust
        • 22/05/16 Local approval granted for Betsi Cadwaladr University Health Board
      • June 2016
        • 16/06/16 Local approval granted for Great Ormond Street Hospital for Children NHS Foundation Trust
        • 16/06/16 Local approval granted for Royal Free London NHS Foundation Trust
        • 27/06/16 Local approval granted for University Hospital of North Midlands NHS Trust
        • 30/06/16 Local approval granted for South Eastern Health and Social Care Trust
        • 30/06/16 Local approval granted for Wirral University Teaching Hospital NHS Foundation Trust
      • July 2016
        • 06/07/16 Local approval granted for Epsom and St Helier University Hospitals NHS Trust
        • 21/07/16 Local approval granted for NHS Greater Glasgow and Clyde
      • August 2016
        • 02/08/16 Local approval granted for University Hospitals of Leicester NHS Trust
        • 03/08/16 Local approval granted for Alder Hey Children’s NHS Foundation Trust
        • 08/08/16 Local approval granted for Northern Health and Social Care Trust
        • 30/08/16 Local approval granted for The Dudley Group NHS Foundation Trust
      • September 2016
        • 26/09/16 Local approval granted for University Hospitals Birmingham NHS Foundation Trust
      • October 2016
        • 28/10/16 Local approval granted for Guy’s and St Thomas’ NHS Foundation Trust
      • January 2017
        • 09/01/17 Local approval granted for Oxford University Hospitals NHS Foundation Trust
        • 20/01/17 Approval granted by UK Renal Registry to link survey data to clinical data
      • February 2017
        • 03/02/17 Local approval granted for NHS Lanarkshire
      • June 2017
        • 27/06/17 Clinical data for study participants provided by UK Renal Registry
      • August 2017
        • 09/08/17 End of national recruitment

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Site participation in the SPEAK study

The map below shows sites currently open to recruitment in green, and sites now closed to recruitment in pale green.

All UK renal units took part in the study.

 

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Recruitment to the SPEAK study

The study recruited 976 participants of a recruitment target of 1000.

Many thanks to all the sites for this fantastic effort!

Click to download the SPEAK study recruitment chart

Click to download the SPEAK study recruitment by site and month to end of last month

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Tweets about SPEAK study updates can be found on the Twitter feed below:



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