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Information and Consent
The present information is directed to the participants of the survey submitting their recordings via the website.
What is Colive Voice?
The Colive Voice research project aims to see if we can identify vocal biomarkers of severe conditions and frequent health symptoms. This is a Luxembourgish initiative aiming to collect data from participants of several countries. The project is based on digital technologies and statistical algorithms. This research initiative is handled by the Deep Digital Phenotyping Research Unit from the Luxembourg Institute of Health.
What is a vocal biomarker?
A "vocal biomarker" is a feature in your voice, or a combination of features that can help to detect a health condition or to monitor a specific symptom. Thanks to this research, one day, we may be able to easily monitor our health, for example by talking to our smartphone.
How to identify vocal biomarkers?
To achieve this objective, the researchers need to build a large multilingual database of vocal records combined with health data. Based on this, they will detect specific health characteristics from the voice, using machine learning techniques i.e. algorithms that can learn from data and identify patterns (biomarkers) with minimal human intervention. The accuracy of the algorithms is improving over time, with the addition of more data from other participants.
How do I participate?
Donate your voice! Participation is anonymous. Once you have consented to participate you will have to answer a few questions related to your health and then perform consecutive voice recordings.
How can I contribute more to medical research?
Your participation is very important for this research, we thank you in advance for it. The more participants there are, the more precise the results will be, so please share this link to your friends, family and on social media. We will provide you a link to share the project at the end of the survey.
Categories of data collected
Your participation in the study involves collecting personal data about you to the extent that it is necessary to meet the scientific objectives of the study. Data will be collected just once, when completing this survey, we will not revert back to you for additional requests.
In particular will be collected:
- Basic information: demographic factors (age, gender, language, ...), lifestyle factors (alcohol, smoking...) and anthropometric factors (weight, height, ...)
- Health data: health status (symptoms, treatments, diseases), psychological health
- Voice records (please note that your device will ask you to access to your microphone and that you have to acept in order to perform the voice records)
- Technical data: date and time of completion of the survey. Upon submission of the survey, your IP address alone will be securely transferred to ipstack.com, an external service provider, whose only purpose is to determine the country of origin of your current IP address. Your country of origin will be storred in our database. Your IP address will not be stored by ipstack.com and will not be stored in the Colive database.
No personal data is collected which would allow us directly to identify an individual. We do not collect any identifying data such as your name, email address, date of birth or any other unique piece of identification. The data that we collect is held so it cannot be put together ("linked") to identify a user specifically.
Data controller
The Luxembourg Institute of Health (LIH), having its registered address at 1A-B, rue Thomas Edison L-1445 Strassen, LUXEMBOURG, is data controller of the research project "Colive Voice" in the meaning of the European General Data Protection Regulation (GDPR).
This means that LIH is responsible for the collection, analysis and more generally for processing your personal data and ensures their protection, in accordance with the GDPR and any subsequent text replacing or supplementing this text (in particular the law of August 1, 2018 on the organization of the National Commission for Data Protection and GDPR Implementation).
Purpose and legal basis for data processing
The use of your personal data is necessary to enable us to achieve the aims of the study, which we are conducting in the public interest and for the purposes of scientific research (art. 6.1e and art. 9.2j of the GDPR).
Data sharing
The data collected in the frame of this project may be shared in the future for research purposes in similar health research areas but only in an anonymous form.
Data hosting
All study data is collected using the Jotform, Inc. electronic tool (USA), which allows for the creation of secure online questionnaires to collect data. Data collected via Jotform, Inc. is securely stored in Europe (Germany). Questionnaires are encrypted for additional security. Jotform, Inc. is the Data Processor of LIH, which is conducting the study and is used to collect data from the survey questionnaire. Once collected, the data is transferred to LIH’s secure servers and permanently deleted from Jotform, Inc.'s servers. Under no circumstances do Jotform, Inc. employees have access to data collected on Jotform, Inc.'s servers, except in exceptional cases following an explicit request from the study manager to resolve a problem.
Data security and integrity
LIH takes appropriate security measures, depending on the sensitivity of the data concerned, to protect your data from the risk of unauthorised access, loss, fraudulent use, disclosure, modification and destruction. Your data will be treated as strictly confidential.
Retention periods
LIH will retain the data collected via the application for 15 years following the date of collection.
Your rights
As we are not collecting data that enable us to identify you, your rights are limited. The exercise of such rights would require to identify study participants, which would considerably weaken the security and confidentiality of data collected for our survey.
However, you have the right to lodge a complaint with Luxembourg's National Commission for Data Protection (CNPD) in relation to the processing of your personal data.
For any question or information about how LIH processes your personal data, please contact LIH’s Data Protection Officer by email at dpo@lih.lu or by post at the following address:
LUXEMBOURG INSTITUTE OF HEALTH
Data Protection Office
1A-B, rue Thomas Edison
L-1445 Strassen
LUXEMBOURG