Project “Juntas Menos Raras”
On Sunday, June 29, we will have the presence of researchers from the Faculty of Biology at the University of Barcelona at the PRBB: Dr. Neus Martínez Abadías, Dr. Esther Esteban, and Dr. Aroa Casado, who are developing the “Juntas Menos Raras” project.
We invite you to participate with your child in the project by taking part in a series of simple data collection tasks and tests, which are detailed below.
To participate: Sign up here You will be added to the list of participants, and you will be notified of the time of your appointment on Sunday, June 29.
If you decide to participate, there will be some simple and quick tests:
• Photos will be taken of your face from different angles.
• A small saliva sample will be collected for DNA analysis (genetic information).
• Your teeth will be checked to rule out that facial changes are due to dental issues.
• Your fingerprints will be taken to identify any patterns related to brain development.
All these tests will take less than 45 minutes and are painless and safe.
• Your information will be confidential and only accessible to the research team.
• The data will be used solely for scientific research.
• If you wish, you will receive an annual summary of the study’s progress.
• You may withdraw from the study at any time without giving an explanation.
Although you won’t receive any direct benefit, your participation will help doctors recognize rare diseases more quickly in the future and provide better assistance to other families in similar situations.
The study is led by experts from the University of Barcelona and follows all safety and privacy regulations. If you have any questions, you can always speak with the research team.
In summary, this project aims to better understand these diseases in a simple and risk-free way, helping improve diagnosis and quality of life for many people in the future.
📽️ More information and a video about data collection and informed consent here:
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