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Published on: May 29, 2017
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Decentralized Biobanking Apps for Patient Tracking of Biospecimen Research: Real-World Usability and Feasibility
William Sanchez1, Ananya Dewan2, Eve Budd3
1de-bi, co., Greencastle, PA, United States.
JMIR Bioinformatics and Biotechnology
|April 10, 2025
Summary
Decentralized biobanking apps empower patients to track donated biospecimens using nonfungible token (NFT) digital twins. This pilot study demonstrates technical feasibility for enhanced patient engagement and accelerated biomedical research.
Area of Science:
- Biotechnology
- Biobanking
- Digital Health
Background:
- Current biobank privacy policies limit transparency and patient value by removing identifiers from donated specimens.
- Decentralized biobanking apps are being developed to reconnect patients with their biospecimens using a privacy-preserving nonfungible token (NFT) digital twin framework.
- A pilot study was conducted with breast cancer biobank members to test this novel decentralized platform.
Purpose of the Study:
- To demonstrate the technical feasibility of patient-friendly biobanking applications.
- To assess the integration capabilities of these apps with existing institutional biobanks.
- To establish the foundational framework for decentralized biobanking utilizing NFT digital twins.
Main Methods:
- A decentralized biobanking mobile app was designed, developed, and deployed for a feasibility pilot (2021-2023) within a breast cancer biobank.
- The app integrated with laboratory information management systems using secure, anonymized data and employed nontransferable ERC-721 NFTs for specimen-user linkage.
- User journeys and NFT deployment data were analyzed, complemented by feedback from design workshops.
Main Results:
- The app featured sections for learning about biobanking, tracking personal biospecimens, following research, and managing data preferences.
- 405 participants downloaded the app, with 361 being biobank members; 140 NFTs were minted at an average cost of $4.51 per token.
- 89.3% of users claimed NFTs, tracking 1812 personal specimens used in 42 research protocols, indicating strong user engagement.
Conclusions:
- Decentralized biobanking apps are technically feasible for empowering patients to track their donated biospecimens through integration with institutional biobanks.
- The pilot highlights the potential to accelerate biomedical research via enhanced patient engagement.
- Further development is required to optimize platform accessibility, efficiency, scalability, and establish robust incentive and governance structures for decentralized biobanking.
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