Biorepositories

Greenberg, Benjamin; Christian, Jennifer; Henry, Leslie Meltzer; Leavy, Michelle B; Moore, Helen

doi:10.23970/ahrqregistriesbio

Cited by 2 publications

(2 citation statements)

References 32 publications

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“…The recording of the date on the tube needs to be enforced because biospecimens are only kept for a specific period and those with no dates may need to be discarded. Proper date annotation is critical to allow biospecimens' data integrity and quality [17,19]. In addition, some of the archived biospecimens were exhausted in the freezer, but their information was not updated in the database.…”

Section: (088%) Discussionmentioning

confidence: 99%

“…A well-maintained biorepository is expected to have stored biospecimens to ensure quick biospecimen retrieval and the validity of the analytical tests. This includes a clear link between the biospecimen data and clinical and demographic information, increasing the scientific value of stored biospecimens [16,17]. This can be achieved if clearly defined procedures govern biorepository processes.…”

Section: Introductionmentioning

confidence: 99%

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Improved Biorepository to Support Sickle Cell Disease Genomics and Clinical Research: A Practical Approach to Link Patient Data and Biospecimens from Muhimbili Sickle Cell Program, Tanzania

Masamu,

Sangeda,

Mgaya

et al. 2024

Biopreservation and Biobanking

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Section: (088%) Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Improved Biorepository to Support Sickle Cell Disease Genomics and Clinical Research: A Practical Approach to Link Patient Data and Biospecimens from Muhimbili Sickle Cell Program, Tanzania

Masamu,

Sangeda,

Mgaya

et al. 2024

Biopreservation and Biobanking

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Improved biorepository to support sickle cell disease genomics and clinical research: A practical approach to link patient data and biospecimens from Muhimbili Sickle Cell Program, Tanzania

Masamu

Sangeda

Mgaya

et al. 2023

Preprint

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Genetic modifiers underlying various sickle cell disease phenotypic expressions are largely unexplored in Africa due to lack of databases linking biospecimens with demographic and clinical data. The problem may be compounded by a complete lack of biorepositories in these settings. This article aims to document the physical verification of biospecimens stored in the biorepository and link them to patient clinical and demographic information to facilitate plans for genomic and related clinical research studies. We reviewed and updated the existing biorepository infrastructure at Muhimbili Sickle Cell Programme in Dar es Salaam, Tanzania. The database of archived biospecimens was updated with the location information of respective biospecimens following the physical verification of biospecimens and then mapping the patient demographic and clinical data with the biospecimen data using sickle cell patients’ demographic identifiers. Three freezers maintained at -80°C store a total of 74,079 biospecimens, of which 63,345 were from 5,159 patients registered in the Muhimbili Sickle Cohort from 2004 to 2016. Out of stored biospecimens, follow-ups were 46,915 (74.06%), control 8,067 (12.74%), admission 5,517 (8.71%) and entry 2,846 (4.49%). Of these registered patients, females were 2,521 (48.87%) and males were 2,638 (51.13%). The age distribution was 1 to 59 years, with those above 18 years being 577 (11.18%) and children 4,582 (88.82%) of registered patients. The notable findings during the process include a lack of automated biospecimen checks, laboratory information management system and standardization of equipment used, biospecimens not linked to clinical and demographic data, date format inconsistencies, lack of regular updating of a database on exhausted biospecimens and updates when biospecimens are moved between positions within freezers. Well-organized biorepository plays a crucial role in answering future research questions. Enforcing strict standard operating procedures and quality control standards will ensure that laboratory scientists and other users adhere to the best biospecimen management procedures.

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Biorepositories

Cited by 2 publications

References 32 publications

Improved Biorepository to Support Sickle Cell Disease Genomics and Clinical Research: A Practical Approach to Link Patient Data and Biospecimens from Muhimbili Sickle Cell Program, Tanzania

Improved Biorepository to Support Sickle Cell Disease Genomics and Clinical Research: A Practical Approach to Link Patient Data and Biospecimens from Muhimbili Sickle Cell Program, Tanzania

Improved biorepository to support sickle cell disease genomics and clinical research: A practical approach to link patient data and biospecimens from Muhimbili Sickle Cell Program, Tanzania

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