Biobanking for Neurodegenerative Diseases: Challenge for Translational Research and Data Privacy

Achiron, A, Grotto, I, Balicer, R, Magalashvili, D, Feldman, A, Gurevich, M. 2010. Microarray analysis identifies altered regulation of nuclear receptor family members in the pre-disease state of multiple sclerosis. Neurobiol Dis 38(2):201–9.
Google Scholar | Crossref | Medline Albert, MS, DeKosky, ST, Dickson, D, Dubois, B, Feldman, HH, Fox, NC others. 2011. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association Workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement 7(3):270–9.
Google Scholar | Crossref Baber, R, Kiehntopf, M. 2019. Automation in biobanking from a laboratory medicine perspective. J Lab Med 43(6):329–38.
Google Scholar | Crossref Baker, M . 2016. 1,500 scientists lift the lid on reproducibility. Nature 533(7604):452–4.
Google Scholar | Crossref Betsou, F, Lehmann, S, Ashton, G, Barnes, M, Benson, EE, Coppola, D others. 2010. Standard preanalytical coding for biospecimens: defining the sample preanalytical code. Cancer Epidemiol Biomarkers Prev 19(4):1004–11.
Google Scholar | Crossref | Medline Blennow, K, Hampel, H, Weiner, M, Zetterberg, H. 2010. Cerebrospinal fluid and plasma biomarkers in Alzheimer disease. Nat Rev Neurol 6(3):131–44.
Google Scholar | Crossref | Medline Bonini, P, Plebani, M, Ceriotti, F, Rubboli, F. 2002. Errors in laboratory medicine. Clin Chem 48(5):691–8.
Google Scholar | Crossref Bosisio, F, Barazzetti, G, Koutaissoff, D, Spencer, B. 2021. Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship–a qualitative study of broad consent in a hospital setting. J Community Genet 12(1):15–25.
Google Scholar | Crossref | Medline Boxer, AL, Yu, JT, Golbe, LI, Litvan, I, Lang, AE, Höglinger, GU. 2017. Advances in progressive supranuclear palsy: new diagnostic criteria, biomarkers, and therapeutic approaches. Lancet Neurol. 16(7):552–63.
Google Scholar | Crossref | Medline Breier, M, Wahl, S, Prehn, C, Fugmann, M, Ferrari, U, Weise, M others. 2014. Targeted metabolomics identifies reliable and stable metabolites in human serum and plasma samples. PLoS One 9(2):e89728.
Google Scholar | Crossref | Medline Campbell, LD, Astrin, JJ, DeSouza, Y, Giri, J, Patel, AA, Rawley-Payne, M others. 2018. The 2018 revision of the ISBER best practices: summary of changes and the editorial team’s development process. Biopreserv Biobank 16(1):3–6.
Google Scholar | Crossref Coors, ME, Westfall, N, Zittleman, L, Taylor, M, Westfall, JM. 2018. Translating biobank science into patient-centered language. Biopreserv Biobank 16(1):59–63.
Google Scholar | Crossref | Medline Council of Europe Committee of Ministers . 2006. Recommendation Rec(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin and its Explanatory Memorandum. https://www.coe.int/t/dg3/healthbioethic/Activities/10_Biobanks/Rec%282006%294%20EM%20E.pdf
Google Scholar Council of Europe Committee of Ministers . 2016. Recommendation CM/Rec(2016)6 of the Committee of Ministers to member states on research on biological materials of human origin. https://search.coe.int/cm/Pages/result_details.aspx?ObjectID=090000168064e8ff
Google Scholar De Souza, YG, Greenspan, JS. 2013. Biobanking past, present and future: responsibilities and benefits. AIDS 27(3):303–12.
Google Scholar | Crossref De Vries, RG, Tomlinson, T, Kim, HM, Krenz, CD, Ryan, KA, Lehpamer, N, and, others. 2016. The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate. Life Sci Soc Policy 12:3.
Google Scholar | Crossref | Medline Durant, TJS, Gong, G, Price, N, Schulz, WL. 2020. Bridging the collaboration gap: real-time identification of clinical specimens for biomedical research. J Pathol Inform 11:14.
Google Scholar | Crossref | Medline Eder, J, Gottweis, H, Zatloukal, K. 2012. IT solutions for privacy protection in biobanking. Public Health Genomics 15(5):254–62.
Google Scholar | Crossref | Medline Elkord, E . 2009. Frequency of human T regulatory cells in peripheral blood is significantly reduced by cryopreservation. J Immunol Methods 347(1–2):87–90.
Google Scholar | Crossref | Medline Enroth, S, Hallmans, G, Grankvist, K, Gyllensten, U. 2016. Effects of long-term storage time and original sampling month on biobank plasma protein concentrations. EBioMedicine 12:309–14.
Google Scholar | Crossref | Medline Florell, SR, Coffin, CM, Holden, JA, Zimmermann, JW, Gerwels, JW, Summers, BK others. 2001. Preservation of RNA for functional genomic studies: a multidisciplinary tumor bank protocol. Mod Pathol 14(2):116–28.
Google Scholar | Crossref | Medline Gayet-Ageron, A, Rudaz, S, Perneger, T. (2017). Biobank attributes associated with higher patient participation: a randomized study. Eur J Hum Genet 25(1):31–6.
Google Scholar | Crossref GBD 2015 Neurological Disorders Collaborator Group . 2017. Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 16(11):877–97.
Google Scholar GBD 2016 Neurology Collaborators . 2019. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 18(5):459–80.
Google Scholar Giampieri, M . 2012. Communication and informed consent in elderly people. Minerva Anestesiol 78(2):236–42.
Google Scholar | Medline Gille, F, Axler, R, Blasimme, A. 2021. Transparency about governance contributes to biobanks’ trustworthiness: call for action. Biopreserv Biobank. 19(1):83–5.
Google Scholar | Crossref | Medline Gottweis, H, Gaskell, G, Starkbaum, J. 2011. Connecting the public with biobank research: reciprocity matters. Nat Rev Genet 12(11):738–9.
Google Scholar | Crossref | Medline Guerin, JS, Murray, DW, McGrath, MM, Yuille, MA, McPartlin, JM, Doran, PP. 2010. Molecular Medicine Ireland guidelines for standardized biobanking. Biopreserv Biobank 8(1):3–63.
Google Scholar | Crossref | Medline Guo, D, Wang, A, Xie, T, Zhang, S, Cao, D, Sun, J. 2020. Effects of ex vivo ischemia time and delayed processing on quality of specimens in tissue biobank. Mol Med Rep 22(5):4278–88.
Google Scholar Hallinan, D . 2020. Broad consent under the GDPR: an optimistic perspective on a bright future. Life Sci Soc Policy 16(1):1.
Google Scholar | Crossref | Medline Hallinan, D . 2021. Biobank oversight and sanctions under the general data protection regulation. In: Slokenberga, S, Tzortzatou, O, Reichel, J, editors). GDPR and biobanking. Law, governance and technology series, Vol 43. Springer; pp. 121–44.
Google Scholar Harish, G, Venkateshappa, C, Mahadevan, A, Pruthi, N, Bharath, MM, Shankar, SK. 2011. Effect of storage time, postmortem interval, agonal state, and gender on the postmortem preservation of glial fibrillary acidic protein and oxidatively damaged proteins in human brains. Biopreserv Biobank 9(4):379–87.
Google Scholar | Crossref | Medline Hok-A-Hin, YS, Willemse, EAJ, Teunissen, CE, Del Campo, M. 2019. Guidelines for CSF processing and biobanking: impact on the identification and development of optimal CSF protein biomarkers. Methods Mol Biol 2044:27–50.
Google Scholar | Crossref | Medline Jack, CR, Bennett, DA, Blennow, K, Carrillo, MC, Dunn, B, Haeberlein, SB others. 2018. NIA-AA research framework: toward a biological definition of Alzheimer’s disease. Alzheimers Dement 14(4):535–62.
Google Scholar | Crossref Kinkorová, J . 2015. Biobanks in the era of personalized medicine: objectives, challenges, and innovation: overview. EPMA J. 7:4.
Google Scholar | Crossref | Medline LaBaer, J, Miceli, JF, Freedman, LP. 2018. What’s in a sample? Increasing transparency in biospecimen procurement methods. Nat Methods 15(5):303–4.
Google Scholar | Crossref | Medline Lee, JE, Kim, SY, Shin, SY. 2015. Effect of repeated freezing and thawing on biomarker stability in plasma and serum samples. Osong Public Health Res Perspect 6(6):357–62.
Google Scholar | Crossref Leitão, MJ, Baldeiras, I, Herukka, SK, Pikkarainen, M, Leinonen, V, Simonsen, AH others. 2015. Chasing the effects of pre-analytical confounders—a multicenter study on CSF-AD biomarkers. Front Neurol 6:153.
Google Scholar | Crossref | Medline Lindestam Arlehamn, CS, Dhanwani, R, Pham, J, Kuan, R, Frazier, A, Rezende Dutra, J others. 2020. Α-synuclein-specific T cell reactivity is associated with preclinical and early Parkinson’s disease. Nat Commun. 11(1):1875.
Google Scholar | Crossref | Medline Linsen, L, Van Landuyt, K, Ectors, N. 2019. Automated sample storage in biobanking to enhance translational research: the bumpy road to implementation. Front Med (Lausanne). 6:309.
Google Scholar | Crossref Lippi, G, Guidi, GC, Mattiuzzi, C, Plebani, M. 2006. Preanalytical variability: the dark side of the moon in laboratory testing. Clin Chem Lab Med 44(4):358–65.
Google Scholar | Crossref Lunshof, JE, Church, GM, Prainsack, B. 2014. Information access. Raw personal data: providing access. Science 343(6169):373–4.
Google Scholar | Crossref Mapstone, M, Cheema, AK, Fiandaca, MS, Zhong, X, Mhyre, TR, MacArthur, LH others. 2014. Plasma phospholipids identify antecedent memory impairment in older adults. Nat Med 20(4):415–8.
Google Scholar | Crossref | Medline Marsh, FH . 1986. Informed consent and the elderly patient. Clin Geriatr Med 2(3):501–10.
Google Scholar | Crossref Micke, P, Ohshima, M, Tahmasebpoor, S, Ren, ZP, Ostman, A, Pontén, F others. 2006. Biobanking of fresh frozen tissue: RNA is stable in nonfixed surgical specimens. Lab Invest 86(2):202–11.
Google Scholar | Crossref | Medline Neubauer, T, Heurix, J. 2011. A methodology for the pseudonymization of medical data. Int J Med Inform 80(3):190–204.
Google Scholar | Crossref | Medline | ISI Neubauer, T, Riedl, B. 2008. Improving patients privacy with pseudonymization. Stud Health Technol Inform 136:691–6.
Google Scholar | Medline Palmqvist, S, Tideman, P, Cullen, N, Zetterberg, H, Blennow, K, Dage, JL others. 2021. Prediction of future Alzheimer’s disease dementia using plasma phospho-tau combined with other accessible measures. Nat Med 27(6):1034–42.
Google Scholar | Crossref | Medline Paskal, W, Paskal, AM, Dębski, T, Gryziak, M, Jaworowski, J. 2018. Aspects of modern biobank activity—comprehensive review. Pathol Oncol Res 24(4):771–85.
Google Scholar | Crossref | Medline Peloquin, D, DiMaio, M, Bierer, B, Barnes, M. 2020. Disruptive and avoidable: GDPR challenges to secondary research uses of data. Eur J Hum Genet 28(6):697–705.
Google Scholar | Crossref | Medline Pitt, KE, Campbell, LD, Skubitz, APN, Aamodt, R, Anouna, A, Baird, P others. (2005). Best practices for repositories I: collection, storage, and retrieval of human biological materials for research. Cell Preserv Technol 3(1):5–48.
Google Scholar | Crossref Raivola, V, Snell, K, Helén, I, Partanen, J. 2019. Attitudes of blood donors to their sample and data donation for biobanking. Eur J Hum Genet 27(11):1659–67.
Google Scholar | Crossref | Medline Rundgren, IM, Bruserud, Ø, Ryningen, A, Ersvær, E. 2018. Standardization of sampling and sample preparation for analysis of human monocyte subsets in peripheral blood. J Immunol Methods 461:53–62.
Google Scholar | Crossref | Medline Sancesario, G, Bernardini, S. 2019. AD biomarker discovery in CSF and in alternative matrices. Clin Biochem 72:52–7.
Google Scholar | Crossref | Medline Sancesario, GM, Bernardini, S. 2018. Diagnosis of neurodegenerative dementia: where do we stand, now? Ann Transl Med 6(17):340.
Google Scholar | Crossref | Medline Sancesario, GM, Esposito, Z, Nuccetelli, M, Bernardini, S, Sorge, R, Martorana, A others. 2010. Aβ1-42 detection in CSF of Alzheimer’s disease is influenced by temperature: indication of reversible Aβ1-42 aggregation? Exp Neurol 223(2):371–6.

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