Research Privacy Policy
We are pleased that you are participating in our research. Transparency is a key element of our work and this Privacy Privacy is designed to inform you about how and why CHAMP1 Alliance uses your personal data for research, what your rights are, and, how to contact us if you have questions or concerns about the use of your personal data
BACKGROUND
This Privacy Policy describes our privacy practices in plain language, keeping legal and technical jargon to a minimum, to make sure you understand the information provided. However, to achieve this objective we would like to explain to you the following concepts.
a) What is Personal Data?
Personal Data is any includes information relating to an individual who can be identified or who is identifiable, directly from the information in question; or who can be indirectly identified from that information in combination with other information.
b) What is Special Category Data?
Special category data is Personal Data that needs more protection because it is sensitive. This includes Personal Data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs,
trade union membership, genetic data, biometric data. As well as, data concerning health, a person’s sex life; and a person’s sexual orientation. In order to lawfully process Special Category Data, it is necessary to consent to the processing.
c) What is Processing?
“Processing” means and covers virtually any handling of data.
WHAT LAW APPLIES
We will only use your Personal Data in accordance with the applicable data protection laws, in particular the UK’s Data Protection Act (“DPA”), Italy’s Data Protection Code (“DPC”), the EU’s General Data Protection Regulation (“GDPR”), and Florida’s Digital Bill of Rights (“FDBR”).
WHO IS RESPONSIBLE
The person responsible in the sense of the DPA, DPC, FDBR and the GDPR is CHAMP1 Alliance composed of The CHAMP1 Research Foundation of 1367 Whitewood Ave. Spring Hill, Fl. 34609 and The CHAMP1 Research Foundation – Europe of Via Trattati di Roma, 20 – 46023 Gonzaga (MN) – Italy, CHAMP1 UK of Wimborne, Dorset, UK, (“CHAMP1 Alliance”, “we”, “us”, or “our”).
Please direct any questions you may have to info@champ1foundation.org
DATA COLLECTION
a) General
All research projects are different and the information we collect will vary. However, our researchers will only collect information that is essential for the purpose of the research. Research data is normally anonymised as quickly as possible after data collection so that individuals cannot be recognised and your privacy is protected. You will not be able to withdraw your data after this point.
Some data e.g. Genetic Variant Data is frequently collected anonymously so cannot be withdrawn once you have given permission for it to be used. Where you may be identifiable in a research publication (e.g. an attributable quote or a photograph), we will seek your explicit consent.
b) Contacting Us
We offer you the opportunity to contact us using various methods. We collect the data you submit such as your name, email address, telephone number and your message in order to process your enquiry and respond to you. We also offer to contact us via the messaging services of WhatsApp and Messenger (Facebook). If you contact us via WhatsApp or Messenger we store and use the mobile phone number in case of WhatsApp and Profile Information in case of Messenger, you use and – if provided – your first and last name in accordance with the provision of a contractual or pre-contractual measure to process and respond to your request. The legal basis is both your consent and contract.
c) Participating in our Research
We process the data of our participants in order to be able to conduct our research as well as to ensure security and to be able to develop it further. The scope of the data processed also depends on the data provided during participation. Participants may provide their Full Name, age, gender, contact
information, or even health-related data and some information about various aspects of their lives. As such some of the Data you provide may be considered Personal Data or Special Category Data. You have choices about the Data you provide and how you share it. Please do not share information that you would not want to be available.
If you use our Forms, we may process both your Personal Data and Special Category Data using the service provider Softr and store your data and the data related to your participating in our research in our Airtable based data management system. This data processing is based on our legitimate interest.
The legal basis for the processing of your Personal Data and Special Category Data is the establishment and implementation of a contract (Participating in our Research) as well as your consent. You may withdraw your consent and request us to stop using and/or disclosing your Personal Data and Special Category Data by submitting your request to us.
d) Our Database
We process genetic variant data obtained from our Participants in our Database (“Genetic Variant Data”) in order to further our work and efforts. Genetic Variant Data may derive from Personal Data is however anonymized during the collection process. As such Genetic Variant Data makes no reference to a specific individual and can not be used to be re-identify and thus falls outside the scope of data protection regulations.
e) Consent
We will always tell you about the information we wish to collect from you and how we will use it. We will seek your consent for the collection and use of your data in specific research projects. For children, young people and other vulnerable groups CHAMP1 Alliance will agree to an appropriate consent procedure to ensure participant rights are protected.
DATA SHARING
To communicate our research to the public and the academic community your anonymised data is likely to form part of a research publication or conference presentation, etc. Where researchers wish to use any information that would identify you, specific consent will be sought.
The privacy of your personal data is paramount and will not be disclosed unless there is a justified purpose for doing so.
Your data may be shared with:
● Immediate project team who are authorized to work on the project and access the information. This may include CHAMP1 Alliance staff or collaborators at other organizations authorized to work on the project.
● Our research may be audited and access to the data may be required. CHAMP1 Alliance puts in place safeguards to ensure that audits are conducted in a secure and confidential manner.
● In the case of complaints about a research project CHAMP1 Alliance may require access to the data as part of our Research Misconduct Procedure. We may transfer your Personal Data to other companies as necessary for the purposes described in this Privacy Policy. In order to provide adequate protection for your Personal Data when it is transferred, we have contractual arrangements regarding such transfers. We take all reasonable technical and organizational measures to protect the Personal Data we transfer.
STORAGE AND SECURITY
CHAMP1 Alliance takes a robust approach to protecting the information it holds with dedicated storage areas for research data with controlled access.If you are participating in a particularly sensitive project CHAMP1 Alliance puts into place additional layers of security.
Alongside these technical measures there are comprehensive and effective policies and processes in place to ensure that users and administrators of information are aware of their obligations and responsibilities for the data they have access to.
By default, people are only granted access to the information they require to perform their duties. Training is provided to new staff joining CHAMP1 Alliance and existing staff have training and expert advice available if needed.
RETENTION
Your information will not be kept for longer than is necessary and is usually kept in an anonymised format. The length of time for which we keep your data will depend on a number of factors including the importance of the data, the funding requirements, and the nature of the study.
After anonymisation your data may be stored in CHAMP1 Alliance research data archive where it may be accessed by other researchers with permission from CHAMP1 Alliance.
YOUR RIGHTS AND PRIVILEGES
a) Privacy rights
Under the DPA, DPC, and the GDPR, you can exercise the following rights:
● Right to information
● Right to rectification
● Right to deletion
● Right to data portability
● Right of objection
● Right to withdraw consent
● Right to complain to a supervisory authority
● Right not to be subject to a decision based solely on automated processing.
Under the FDBR, you can exercise the following rights:
● The right to access;
● The right to rectification;
● The right to erasure;
● The right to restrict processing;
● The right to object to processing;
● The right to data portability;
If you have any questions about the nature of the Personal Data we hold about you, or if you wish to
exercise any of your rights, please contact us.
b) Updating your information and withdrawing your consent
If you believe that the information we hold about you is inaccurate or request its rectification, deletion, or object to its processing, please do so by contacting us.
c) Access Request
In the event you want to make a Data Subject Access Request, please contact us. We will respond to requests regarding access and correction as soon as reasonably possible. Should we not be able to respond to your request within thirty (30) days, we will tell you why and when we will be able to respond to your request. If we are unable to provide you with any Personal Data or to make a correction requested by you, we will tell you why.
d) Complaint to a supervisory authority
You have the right to complain about our processing of Personal Data to a supervisory authority responsible for data protection. However, we would appreciate the opportunity to address your concerns before you contact any supervisory authority.
e) What we do not do
● We do not request Personal Data from minors and children without Parental or Guardian consent;
● We do not process special category data without obtaining prior specific consent;
● We do not use Automated decision-making including profiling; and
● We do not sell your Personal Data.
VALIDITY AND QUESTIONS
This Privacy Policy was last updated on Saturday, 20th of April, 2024, and is the current and valid version. However, from time to time changes or a revision to this policy may be necessary.
If you feel that the above is not sufficient or if you have any queries as regards the collection, processing or use of your information we are looking forward to hearing from you. We will make every effort to reply as soon as possible and take into consideration any suggestions from your end.