METADAC committee considers applications for major UK cohort studies:
METADAC is open to process sensitive data governance for further longitudinal studies. See “Partner with METADAC“.
| UKHLS | 1958 birth cohort | BCS70 | Millennium | UK Twins | ELSA | |
| Understanding Society; UK household longitudinal study. (includes British Household Panel Survey (BHPS) data | National Child Development Survey NCDS | 1970 birth cohort | Child of the New Century | English Longitudinal Study of Ageing | ||
| Principal Investigator | Prof Michaela Benzeval | Prof Alissa Goodman | Prof Alice Sullivan | Prof Emla Fitzsimons | Prof Andrew Steptoe | |
| Incidental findings | No findings returned currently. | No findings returned currently. | No findings will usually be returned. | Clinically helpful findings returned | ||
| METADAC Role | Linked genetic and phenotype data. | All exome sequence data. All biosamples, DNA. linked genetic and phenotype data. Other arising data not yet available via repositories. | Linked genetic and phenotype (survey) data; Linked epigenetic and phenotype (survey) data. | Applications may be referred to METADAC | Linked genotype and phenotype (survey) data | |
| Tissue bank approval | Planned | Yes | Yes | Yes | No | |
| Commercial use | Must be ‘in the public interest’. | Commercial use Excluded. | ‘won’t work with commercial partners’ but UCL to be paid a share of any commercial benefit. | |||
| Paid-for Access? | Applicants meet the cost. | For samples but not data | At cost. Invoice to be settled before data issue. Genotyping to be done in-house, paid for; surcharge for cherry-picking. | |||
| Exclusions | Additional checks for non-UK Applications | Data from biological resource may not be used to investigate intelligence, criminality or sexuality. The expectation is for health related research. | ||||
| Ethnic diversity | National diversity represented plus additional subgroup | Largely white-British, particularly in the genetic data. | Low representation of ethnic minorities | |||
| Age | Disclosive in oldest subset | Not disclosive: all equal age | Not disclosive: all equal age | Not disclosive: all equal age | 50+ | |
| Biosamples/ DNA | DNA, plasma, serum and whole blood samples | Blood, plasma, saliva, whole blood DNA, cell-line DNA. (Collected 2002-3) | Whole bloods will be collected in 2016/17. | Milk teeth. Saliva from age 3 is depleted; saliva at age 14 collected in 2015. Non-renewable DNA to be prepared. | n/a | |
| Imputed datasets | Yes | Yes | Yes | |||
| Cohort profile(s) | 2010 Understanding Society | Cohort profile: 1958 British birth cohort (National Child Development Study) | Cohort Profile: The English Longitudinal Study of Ageing and English Longitudinal Study of Aging (ELSA) | |||
| Mis-attributed paternity | Genotype data with ambiguity removed from file at EGA. Second check at imputation confirmed no mis-attributed paternity left. | n/a | n/a | n/a | n/a | n/a? |
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