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Renal Risk in Derby (RRID) Study

rrid

For Participants

We are grateful to the many people who volunteered to participate in this study. Your contribution has been very valuable in helping us learn more about chronic kidney disease (CKD) so that each person with CKD can be offered the best treatment for them as an individual. As summarised below, this means that most people with CKD do no need further tests or referral to a Kidney Consultant. We have already learned a great deal and our results have been published in several journals (see bibliography section).

The most important finding so far are:

  1. The majority of people with CKD cared for by family doctors have only mildly reduced kidney function which is unlikely to cause any symptoms.
  2. Only a small proportion of people (6%) with CKD that is diagnosed by their family doctors require referral to a kidney consultant for further tests. The majority can be effectively cared for by their family doctor and simply require an annual check of their kidney function.
  3. CKD is often associated with other medical conditions and this should be taken into account when deciding on the best treatment.
  4. High blood pressure is commonly associated with CKD and it is important to treat this adequately.
  5. High salt intake is associated with factors that suggest a poorer outcome in people with CKD.
  6. Reducing salt intake is associated with better control of blood pressure in people with CKD.
  7. Vitamin D deficiency is present in a small proportion of people with CKD (6%) and there may be some benefit in checking for this because it is easy to treat.
  8. Skin autofluorescence and arterial  stiffness measurements may be useful and simple ways to identify people with CKD who are at higher risk for worsening of their kidney and/or heart disease  but more research is required to confirm this.
  9. The majority of people with CKD in our study had stable kidney function over 5 years (34%) and in a small but significant proportion (19%) the kidney function improved over time such that they no longer fulfilled the criteria for a diagnosis on “CKD”. Only a very small minority (0.2%) required dialysis by the end of 5 years.

 

We plan to follow people who participated in this study again at 10 years after the first study visit. This will probably involve a simple blood test and completion of a questionnaire. The exact format will be decided closer to the time. The RRID study has joined the International Network of CKD Cohort Studies (iNET-CKD) which is sponsored by the International Society of Nephrology and aims to improve knowledge and understanding of CKD worldwide on their website: http://www.theisn.org/initiatives/inet-ckd


Involvement of NHS Digital in Data Collection

The Renal Risk in Derby (RRID) study uses an organisation called NHS Digital to obtain some of the information needed for the research. NHS Digital has replaced the NHS Information Centre, which was mentioned in previous study documentation.  As explained in the Participant Information Sheet, we provided NHS Digital with some participant details including full name, date of birth, NHS number and address. The data was sent using encryption and NHS Digital has robust measures in place to ensure that confidentiality is maintained. This personal information will not be shared with any other organisation. 

To facilitate the study NHS Digital supplies the Chief Investigator, Prof Maarten Taal, with the following information:

  1. The date and cause of death of any participant who dies during the follow-up period of 10 years. This information is obtained from the Office of National Statistics and is derived from death certificates.
  2. The date and reasons for any hospital admissions during the follow-up period. This is obtained from Hospital Episode Statistics and is comprised of data routinely supplied to NHS Digital by all hospitals in the NHS.

 

Participants are identified by name in the initial data that is received from NHS Digital. This is stored on a secure server in the Royal Derby Hospital and only a small number of people who are involved in the study have access to it. Before any analysis is performed, the information is anonymised by replacing the participant name with a study number. The key that links participant names to the study numbers is stored on a secure computer server at the Royal Derby Hospital and this can be accessed only by Professor Taal and research staff involved in the study.

Participants are free to withdraw from the study at any time, without giving a reason. This will not affect the standard of care they receive. In general, we would prefer to continue to use any data collected about a participant prior to the time of withdrawal and will ask any participant who withdraws for their permission to do this.

Use of Your Data in Research – New UK Data Protection Law

Derby Teaching Hospitals NHS Foundation Trust (DHFT) is the sponsor for this study based in the United Kingdom and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. As an NHS organisation we use personally-identifiable information to conduct research to improve health, care and services. The lawful basis for processing your data is a “task in the public interest” and “scientific research”. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research.  This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

DHFT will collect information about you for this research study from your medical records as well as asking Government services that hold medical information about you (such as NHS Digital, the Office for National Statistics, among others) to provide this information to us. This information will include your name, NHS number, date of birth, contact details and health information (including details about hospital admissions and any deaths that occur during the study period), which is regarded as a special category of information. We will use this information to investigate factors that may help us to predict which patients with chronic kidney disease (CKD) will go on to develop serious kidney problems or cardiovascular (heart and blood vessel) disease.

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.

Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance. DHFT will keep identifiable information about you for 10 years after the study has finished.

Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

You can find out more about how we use your information at http://www.derbyhospitals.nhs.uk/research/for-patients-public/your-information/or by contacting the study team on 01332 786608 or email: dhft.derbykidneystudies@nhs.net.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Our Data Protection Officer is Anne Woodhouse and you can contact them at anne.woodhouse1@nhs.net

      You can download a copy of our enhanced privacy notice below