What happens to your data?

Data held in the INPDR is owned by patients.

The safety and security of your data within the INPDR is our number one priority, therefore it is only with your direct consent (as a Niemann-Pick Disease patient) that we hold your data. This data is held on the Registry anonymously and will not contain any personal identifiable information such as names or addresses.

Taking part either through your clinician or by directly sharing Patient Reported Data is voluntary so you can withdraw your consent at any time and you do not have to give a reason.

The INPDR regulates data security, quality and access so if you change your mind and would like to remove your data from the Registry, please let us know. You can contact us directly to remove your data from the Patient Reported Databse but you will need to speak to your clinician to remove your data from the Clinician Reported Database.

Data is only recorded on the INPDR if consent is provided by the person with Niemann-Pick Disease (or for a child, their parent or guardian). Data is added to the Registry either by the patient into the Patient Reported Database or by nominated members of the patient’s clinical care team into the Clinician Reported Database. Both Patient Reported Data and Clinician Reported Data are accessed through secure web portals.

How data is stored

Your data will be treated confidentially and with the utmost care and respect.

All information will be anonymised, so you will not be identifiable. Data will be stored safely and securely in accordance with current data protection regulations.

Requests to access data held in the Registry will be considered by the Scientific Advisory Committee who will carefully consider the merits of the request and will only agree to share consolidated data for the express purpose of helping research progress in Niemann-Pick Disease, using appropriate controls and permissions, and will not be disclosed to any other person unlawfully.

Please note:

  • The team who look after you will be able to identify your data by linking this to a unique subject number which will be given when you enrol onto the Registry.
  • Access to the Registry is restricted to approved individuals who have made an appropriate application and approval is only be given after the application is reviewed by the INPDR team.
  • The data held on the Registry is anonymous and will not contain any personal identifiable information such as names or addresses.

If you have any queries or concerns about your data and security, please get in touch with us.