Establishment of the benchmarking tool for evaluating the operation of biorepositories for pathogenic resource using a modified Delphi method

In recent years,as the infectious diseases caused by pathogens such as novel coronavirus and mpox(formerly called monkeypox)spread globally,the significance of identification,preservation,and sharing of pathogenic resources become prominent.Along with the rapid development of biorepositories,it is imperative to evaluate their operation in a scientific manner.By using the literature review and modified Delphi method,this study develops a benchmarking tool for the comprehensive evaluation of the operation of biorepositories for pathogenic resources.The effective response rates of both rounds of expert surveys were 100%.The authority coefficients(Cr)were 0.82 and 0.85,respectively,manifesting the reliability of consultation results.In the second‐round survey,the Kendall’s coefficient of concordance(Kendall’s W)of all indicators ranged from 0.09 to 0.31(P<0.001),the comprehensive score ranged from 4.02 to 4.94,the standard deviation ranged from 0.21 to 0.77,and the coefficient of variation(CV)ranged from 0.04 to 0.22,indicating that the expert opinions reached consensus.The final benchmarking tool was composed of 4 primary indicators,12 secondary indicators,and 65 tertiary indicators.The weights of the four primary indicators allocated through the rank‐sum ratio method,namely organizational structure,management requirements,biobanking capacity,and sharing capacity,were 30.50%,30.08%,25.45%,and 13.97%,respectively.The benchmarking tool established in this study provides references for the comprehensive evaluation of the operation and puts forward advice for the sustainable development of biorepositories for pathogenic resources.

A Biobank for Long-term and Sustainable Research in the Field of Congenital Heart Disease in Germany

Congenital heart disease （CHD） is the most fi＇equent birth defect （0.8% 1% of all live births）. Due to the advance in prenatal and postnatal early diagnosis and treatment, more than 90% of these patients survive into adulthood today. However, several mid- and long-term morbidi- ties are dominating the follow-up of these patients. Due to the rarity and heterogeneity of the phenotypes of CHD, multicenter registry-based studies are required. The CHD-Biobank was established in 2009 with the aim to collect DNA from patients and their parents （trios） or fi＇om affected families, as well as cardiovascular tissues from patients undergoing corrective heart surgery for cardiovascular malformations. Clinical/phenotype data are matched to the International Paediatric and Congenital Cardiac Code （IPCCC） and the International Statistical Classification of Diseases and Related Health Problems 10th Revision （ICD-10）. The DNA collection currently comprises samples from approximately 4200 participants with a wide range of CHD phenotypes. The collection covers about 430 trios and 120 families with more than one affected member. The cardiac tissue collection comprises 1143 tissue samples [Yore 556 patients alter open heart surgery. The CHD-Biobank provides a comprehensive basis for research in the field of CHD with high standards of data privacy, IT management, and sample logistics.