Data Protection & Security

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 will hold your data. This data is held on the registry anonymously and will not contain any personal identifiable information such as names or addresses – however, your clinician will be able to identify your data by linking to your unique subject number which will be provided upon your registration.

Taking part either through your clinician or directly sharing Patient Reported Data is completely 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 contact us.

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 will be restricted to approved individuals who have made an application to be a part of the registry, and approval will 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.