International Niemann Pick Disease Registry Terms of Service and Data Protection
Terms of Service
By accessing the website at https://www.inpdr.org, you are agreeing to be bound by these terms of service, all applicable laws and regulations, and agree that you are responsible for compliance with any applicable local laws. If you do not agree with any of these terms, you are prohibited from using or accessing this site. The materials contained in this website are protected by applicable copyright and trademark law.
2. Use license
i. Permission is granted to temporarily download one copy of the materials (information or software) on International Niemann Pick Disease Registry’s website for personal, non-commercial transitory viewing only. This is the grant of a license, not a transfer of title, and under this license you may not:
- modify or copy the materials;
- use the materials for any commercial purpose, or for any public display (commercial or non-commercial);
- attempt to decompile or reverse engineer any software contained on International Niemann Pick Disease Registry’s website;
- remove any copyright or other proprietary notations from the materials; or
- transfer the materials to another person or “mirror” the materials on any other server.
ii. This license shall automatically terminate if you violate any of these restrictions and may be terminated by International Niemann Pick Disease Registry at any time. Upon terminating your viewing of these materials or upon the termination of this license, you must destroy any downloaded materials in your possession whether in electronic or printed format.
i. The materials on International Niemann Pick Disease Registry’s website are provided on an ‘as is’ basis. International Niemann Pick Disease Registry makes no warranties, expressed or implied, and hereby disclaims and negates all other warranties including, without limitation, implied warranties or conditions of merchantability, fitness for a particular purpose, or non-infringement of intellectual property or other violation of rights.
ii. Further, International Niemann Pick Disease Registry does not warrant or make any representations concerning the accuracy, likely results, or reliability of the use of the materials on its website or otherwise relating to such materials or on any sites linked to this site.
In no event shall International Niemann Pick Disease Registry or its suppliers be liable for any damages (including, without limitation, damages for loss of data or profit, or due to business interruption) arising out of the use or inability to use the materials on International Niemann Pick Disease Registry’s website, even if International Niemann Pick Disease Registry or a International Niemann Pick Disease Registry authorized representative has been notified orally or in writing of the possibility of such damage. Because some jurisdictions do not allow limitations on implied warranties, or limitations of liability for consequential or incidental damages, these limitations may not apply to you.
5. Accuracy of materials
The materials appearing on International Niemann Pick Disease Registry’s website could include technical, typographical, or photographic errors. International Niemann Pick Disease Registry does not warrant that any of the materials on its website are accurate, complete or current. International Niemann Pick Disease Registry may make changes to the materials contained on its website at any time without notice. However International Niemann Pick Disease Registry does not make any commitment to update the materials.
International Niemann Pick Disease Registry has not reviewed all of the sites linked to its website and is not responsible for the contents of any such linked site. The inclusion of any link does not imply endorsement by International Niemann Pick Disease Registry of the site. Use of any such linked website is at the user’s own risk.
International Niemann Pick Disease Registry may revise these terms of service for its website at any time without notice. By using this website you are agreeing to be bound by the then current version of these terms of service.
8. Governing Law
These terms and conditions are governed by and construed in accordance with the laws of United Kingdom and you irrevocably submit to the exclusive jurisdiction of the courts in that State or location.
1. Data Controller
The protection of personal privacy is an important concern to the International Niemann Pick Disease Registry. Any personal or special category data collected, will be treated in accordance with current data protection legislation.
We will use personal data to further the understanding of Niemann-Pick Disease, the effectiveness and safety of treatments. We will share anonymised personal and special category data with carefully chosen research partners, for the benefit of the Niemann-Pick community.
The International Niemann Pick Disease Registry is registered with the United Kingdom’s Information Commissioner’s Office (ICO) as a Data Controller for the processing of personal data (ZA756155).
2. Data Protection Officer
To ensure compliance with data protection legislation, the International Niemann Pick Disease Registry has appointed an independent Data Protection Officer (DPO). The DPO can be contacted by post at Suite 2, Vermont House, Washington, Tyne & Weir NE37 2SQ, United Kingdom or email at firstname.lastname@example.org.
3. What is personal data?
“Personal Data” allows an individual to be identified either directly or indirectly. Common types of personal data that identify an individual are: name / address. When information is combined with other personal data it may indirectly identify an individual, for example: patient number.
Data related to biometrics, health or genetics is known as “Special Category Data”. This special category data is personal data that needs more protection because it is sensitive.
Personal data (and special category data) can be “Pseudonymised” to help reduce privacy risks by making it more difficult to identify individuals. All identifiable data is removed and replaced by a unique code or key, which is then held separately from the personal data. It is only possible to identify an individual by holding both the information and the key.
Your personal data will be fully “Anonymised” before it is shared with our research partners. All identifiable data is removed and potentially aggregated into bands. It is not possible to identify an individual from anonymised data.
4. What personal data do we collect?
The following categories of personal data and collected and processed by The International Niemann Pick Disease Registry:
Clinician Reported Database (CRD)
Once you have given your consent, your doctor or a member of your medical centre staff will enter your clinical data into the CRD, including:
- Pseudonymised patient identifier;
- Demographic data including, sex, date of birth, ethnicity etc.;
- Special category data including, health, genetics, medication, treatments, test results and other relevant quality of life information.
Patient Reported Database (PRD)
Once you have given your consent, you can enter your experience of living with the disease directly into the PRD:
- Identifiable patient name and contact details;
- Demographic data including sex, date of birth and ethnicity;
- Special category data including, health, medication, treatments, lifestyle and other relevant clinical information.
You can also give permission to linking your PRD and CRD records together.
In order to participate in the International Niemann Pick Disease Registry, you need to provide your explicit consent. We use this consent as the lawful basis to process your personal and special category data.
We will keep your personal and special category data for a period of ten years after the end of the study.
5. How do we use your personal data?
Your personal and special category data is stored and processed within the registry. This may be pooled with other patient clinical data and analysed to generate new knowledge of Niemann Pick diseases in the form of publications in scientific journals or presentations to healthcare professionals.
Under the guidance of the Board and Scientific Advisory Committee, the International Niemann Pick Disease Registry will also produce research and analysis to facilitate understanding of Niemann-Pick Disease Type C and ASMD.
Anonymised data may be shared with third parties (such as researchers) who have submitted data requests that have been reviewed and approved by the Scientific Advisory Committee and the Board of Trustees. Anonymised Data may also be shared with pharmaceutical companies as part of applications for approval of new medicines or to comply with responsibilities set by health bodies such as the European Medicines Agency.
6. How do we protect your personal data?
In order to protect your privacy, the International Niemann Pick Disease Registry has implemented stringent information security and personal data protection policies. Employees and associates who come into contact with your Personal Data have obligations to adhere to our policies, and are regularly trained in security and privacy best practice.
We apply appropriate technical and organisational measures in order to protect data, computing devices and the network from accidental / malicious activities or theft.
7. Who may have access to your personal data?
Your personal data will be used by employees and associates of the International Niemann Pick Disease Registry. The registry is hosted by a third party Data Processor located in Ireland.
8. Your rights
Data Protection Laws, describe individuals who provide their personal data to an organisation as “Data Subjects”. As a data subject, you have a number of rights with respect to how the International Niemann Pick Disease Registry processes your personal data.
If you wish to exercise any of your rights, please contact our independent Data Protection Officer.
Right to be Informed
You have the right to be informed of the use that your personal data will be put to, along with details of the data controller and your rights.
Right to Access
You have the right to access and obtain a copy of your personal data held and processed by the International Niemann Pick Disease Registry, on request.
Right to Rectification
You have the right to request the International Niemann Pick Disease Registry to correct inaccurate or incomplete personal data.
Right to Erasure (to be Forgotten)
You have the right to request the International Niemann Pick Disease Registry to erase your Personal Data from its systems and records. This is not an absolute right however, and does not normally apply to purposes covered by legal obligation or which is necessary for the performance of a contract.
Right to Restrict Processing
You have the right to request the International Niemann Pick Disease Registry to stop or restrict the processing of your personal data. This could be for example, if your personal data is no longer necessary for the purpose of processing.
Right to data portability
You have the right to request a copy of the personal data which you have provided directly to the International Niemann Pick Disease Registry, which is automatically processed in a portable format.
Right to object
You have the right to object to the processing of your personal data, where the International Niemann Pick Disease Registry relies upon “Legitimate Interest” as the lawful basis for processing.
Rights related to automated decision making including profiling
You have the right not to be subject to a decision based solely on automated processing (including profiling), which may significantly affect you.
If you are unhappy with how your personal data is processed by the International Niemann Pick Disease Registry, you have the right to complain to the independent Data Protection Officer. If you remain unhappy following our response to your complaint, you have the right to lodge a further compliant with our Supervisory Authority, The Information Commissioners Office (ICO).
The ICO’s address is: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow Cheshire, SK9 5AF. You can also contact them by telephone on 01625 545 745 or via their website at www.ico.org.uk.
Published 3rd July 2023