Denmark
The Danish Twin Register is the oldest national twin register in the world, with information about twins born in Denmark over the last 140+ years. The Registry contains information about more than 86,000 twin pairs, as well as data from a number of triplets and quadruplets. Omics data are available from selected samples from up to 1200 individuals.
| Name of the connected EIT Health partner: | Lasse Boding |
| Number of individuals: | Total 18,998 |
| Biobank confirmed willingness to provide samples/data for EIT Health studies: | Yes, we are willing to collaborate and provide samples, with an internal representative |
| Contact person(s) and contact data (e-mail address, tel. no) for access purposes: | Jonas Mengel-From, jmengel-from@health.sdu.dk Biobank leader of the Danske Twin Register |
| Number of samples: | Total 3,450 – total 72,174 – 13,468 Buffy coat – 13,247 DNA – 11,372 Filter Paper – 14,775 Plasma – 4,011 RNA – 13,854 Serum – 1,447 Urine |
| Sample types: | Blood packages |
| Omics data: | Selected samples from up to 1200 individuals |
| Website: | Danish Twin Register |
| Type of biobank: | Population-based studies of twins. |
| If longitudinal the frequency: | Selected cohorts have repeated samples, longitudinal with up to 12 years of repeated sampling. |
| Link to central portal to seek samples and data: | Danish Biobank Register www.biobanks.dk |
| Broad consent: | Contact Danish twin register. Currently consents are available dependent on health and age. |
| Option to recall donors: | Yes. |
| Option to recall family members: | Yes. |
| Major terms for access: | Please see: https://www.sdu.dk/en/ Om_SDU/Institutter_centre/ Ist_sundhedstjenesteforsk/Centre/DTR.aspx |
| Ethical and legal compliance: | Danish law |
| Speed and reliability of delivery: | Not available. |
| Pricing: | Not available. |
| Link to operational procedures: | Not available. |
| Storage: | Samples are handled and stored according to standard procedures. |
| Compliance with international standards: | Not available. |
| Current ISO certificates: | Not available. |
| Clinical data linked to samples: | Samples can be linked to clinical data in registries. Questions of health and disease are available from assessments by request. |
| Data standards: | Data are handled and secured according to internal procedures. |
| Data security rules: | Data are handled and secured according to ownership agreements. |
| Research support, what type of expertise?: | Data managers, statisticians, laboratory staff. |
| Core facility services; what type? Link?: | Storage and distribution. Some analytical expertise is available through Odense University Hospital. |
| Queries from national health registers: | Not available. |
| IP rules, what is negotiable?: | Not available. |
| Requirements to study results (access etc.): | Not available. |
| Participant’s right to the information: | Not available. |
| Number of access contracts with industry: | Mainly we are working with academic and hospital partners, but we have previously worked with industrial partners. |
| Statistics about access if available: | Not available. |