In this issue: Data sharing with privacy protection. How can we work together to put together the SDS puzzle?
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The Importance of Data Collection and Data Privacy in Rare Disease Research
Research in rare disease is comparable to putting together a puzzle with each piece of that puzzle serving as a small piece of information about a condition, or in our case, Shwachman-Diamond Syndrome (SDS). To understand the whole picture of SDS, develop treatments, and discover a cure, we need to gather all of the puzzle pieces. This gathering of information is what we call data collection. In the context of rare disease research, because of the scarcity of individuals affected, each piece of information or data point (i.e., every piece of the puzzle) becomes very valuable. And when we put the puzzle pieces together (a process known as data aggregation), it becomes easier to see the complete picture, or gain a better understanding of the disease landscape. This process of putting the puzzle together is crucial for advancing research in rare disease because with more information, scientists and researchers can learn more about the causes, symptoms, and potential treatments for these rare conditions.
Image credit: https://www.zamplo.org/rare-disease
However, the significance lies not only in the collection and synthesis of data but also in the collaborative sharing of this information and findings. If only one person had some puzzle pieces and kept them to themselves, we wouldn't be able to see the whole picture. Similarly, when researchers share their findings and data with each other, it helps everyone in the scientific community work together to solve the puzzle of rare diseases.
In rare disease research, while collaboration is the key to advancing research in rare disease, data privacy and the protection of participants and their data is equally as important. To make a simple analogy, it's like having a lock on your diary or a secret box where you keep your special things. In the world of data collection, data privacy entails the responsible and secure handling of information. It is imperative to balance the necessity of sharing critical information with the imperative to protect individuals' private data. This ensures that progress in understanding and treating rare diseases is achieved while upholding the ethical responsibility researchers have to respect patient privacy.
As we begin the new year, SDS Alliance wants to renew our commitment to the SDS community to support, fund, and perform research that is collaborative and productive, while also protecting the privacy of our patient community. We look forward to working together to assemble the puzzle that is SDS in 2024!
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For more information about data collection and data privacy in rare disease research, you can view this presentation by Sanath Kumar Ramesh, hosted by the Critical Path Institute’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), recently.
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