The Nephrotic Syndrome (UK) app (NeST) is intended only for UK patients who are eligible for and have consented to have their personal and clinical information collected in the National Registry of Rare Kidney Diseases (known as RaDaR).
If you have not already consented to participate in RaDaR, please do not enter any information into NeST. If you believe you are eligible to be included in RaDaR, please speak to your kidney doctor or a member of the clinical team about how you can sign up. Alternatively, you can contact the RaDaR team via email - radar@ukkidney.org
The Nephrotic Syndrome (UK) (NeST/the app) app has been created to allow patients participating in the National Registry of Rare Kidney Diseases (RaDaR) to directly input information about their condition into the registry database. The information provided will help inform research into the patients' rare kidney disease including being used in any clinical trials that the patient might have consented to participate in.
The app also provides information and resources for patients that they may find useful to help them understand more about their condition, provide support, and offer opportunities to participate in further research.
Patients who have consented to RaDaR are encouraged to use NeST to provide information about their kidney condition and how it impacts on their lives. This includes:
To ensure that the information provided by patients is correctly linked to their RaDaR record the app will also require participating patients to provide their Name, NHS Number, and date of Birth.
A copy of the information you enter on the app will be held locally on your phone. It will also be saved into the NeST database and stored safely using data authentication. If you were to change your phone, you can re-download the NeST App and regain access to your information.
The information patients put into the app will be sent to RaDaR where it will be securely stored alongside other information about them which has been collected from their treating hospitals and other parts of the NHS.
The National Registry of Rare Kidney Diseases (RaDaR) is a research database which collects information about patients diagnosed with rare kidney diseases. The collected information is used in research to provide a better understanding of the rare diseases, as well as research into treatments and improved outcomes for patients diagnosed with such diseases. All patients who participate in RaDaR have consented to do so, allowing for information about them and their condition to be collected and analysed in research projects. Additional information about RaDaR and its uses patient information can be found here: https://ukkidney.org/rare-renal/radar.
RaDaR is owned and operated by the UK Kidney Association (UKKA), a not-for-profit organisation registered with the charity commission and is the leading professional body for the UK renal community, improving lives by supporting professionals in the delivery of kidney care and research. Patients can find out more about the UKKA here: https://ukkidney.org/
RaDaR is run by the UKKA's employees based in its offices in Bristol.
Please note that if you access our service using your NHS login details, the identity verification services are managed by NHS England. NHS England is the controller for any personal information you provided to NHS England to get an NHS login account and verify your identity and uses that personal information solely for that single purpose. For this personal information, our role is a "processor" only and we must act under the instructions provided by NHS England (as the "controller") when verifying your identity.
To see NHS login's Privacy Notice and Terms and Conditions, please click here.
This restriction does not apply to the personal information you provide to NeST separately.
RaDaR is encouraging consented participating patients to input information about their condition to gain a broader understanding of the impact their rare kidney disease has on their health. This will help researchers conduct projects looking into rare kidney diseases and where a patient is participating in a clinical trial will provide a more accurate and up to date picture of the participants health and condition.
The information collected via NeST is done so in line with the requirements of the Data Protection Act (2018) with the information being collected under the following legal basis:
Under the Data Protection Act (2018) patients participating in RaDaR via NeST having the following rights regarding the information collected about them.
If a patient wishes to exercise any of these rights, they can contact the RaDaR team and/or the UKKA's data protection officer. Contact details can be found below.
In the NeST app menu, there is a delete account button which when pressed will check that you are sure and then remove all trace of your data from the NeST database. This will prevent any further data being entered or passed on to RaDaR. If you delete the NeST app from your phone, the information you entered will remain in the NeST and RaDaR database. RaDaR will still retain your data in accordance with the consent form you signed during your registration to RaDaR. Please contact you RaDaR representative if you have any questions about this. Withdrawal from RaDaR does not affect the data held within NeST, but data will not be passed on to RaDaR.
Patients who have questions about this privacy notice, NeST or RaDaR can contact the UKKA via the following contact details:
The RaDaR team: radar@ukkidney.org
The UKKA Data Protection Officer: Tom Gray, tom.gray@ukkidney.org
If patients wish to contact the UKKA by post the can do so to the following address:
UK Kidney Association
Brandon House, Building 20a
Southmead Road
Bristol
BS34 7RR
Alternatively, if patients have any concerns about how the UKKA is processing their data, they may contact the Information Commissioner’s Office (the UK regulator for data):
Information Commissioner's Officer
Wycliffe house
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 01625 545745
www.informationcommissioner.gov.uk
The UKKA reserves the right to amend this privacy notice at any time. This notice was last updated on: 11th March 2024.