Fit and well (finding)

Exeter Ten Thousand (EXTEND)

Year Started: 2009

The Exeter Ten Thousand study was started in 2009 to collect genetic, biological, clinical and lifestyle information on 10,000 adult individuals in the Exeter region in order to establish a sampling framework from which participants can be selected on the basis of genotypic or phenotypic predisposition / protection factors. Samples are selected for further analysis or individuals can be recontacted for recruitment. Participants who join Exeter 10000 are living in a community setting and are usually ambulant and well but may have diagnosed with clinical conditions Access to samples or data must be requested through the Steering Committee, which meets once a month.



Access:
Open only through collaboration
Type:
Cross-sectional
Status:
In progress
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Biomarker datasets 0 - 3 months
Clinical records 0 - 3 months
Cold ischemic time 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Genomic datasets 0 - 3 months
Physiological/biochemical measurements 0 - 3 months
Primary care records 0 - 3 months
Quality indicators 0 - 3 months


Male

Young adult (18 - 40 years)

501 - 1000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 75% -99%
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Young adult (18 - 40 years)

1001 - 3000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 75% -99%
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Adult (> 40 years)

3001 - 5000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 75% -99%
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Adult (> 40 years)

3001 - 5000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 75% -99%
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%

Diabetes mellitus type 1 (disorder)

Exeter Archival Diabetes Biobank (EADB)

Year Started: 1980

During his career as a pathologist working in Scotland, Professor Alan Foulis compiled the world’s largest collection of autopsy pancreas samples recovered from patients who died shortly after receiving a diagnosis of type 1 diabetes. This collection was first assembled in the early 1980s from centres across the UK and it consists of nearly 170 cases in total, more than 100 of which are from young people (<20 years old) with recent-onset type 1 diabetes. The samples were originally held in Glasgow but, upon his retirement in 2015, Professor Foulis transferred them to University of Exeter Medical School, where they are now retained. Study of these cases has been hugely influential in shaping our current understanding of the aetiology of type 1 diabetes. Although it is now more than 30 years since this collection was first compiled by Alan Foulis, it continues to represent an invaluable resource for research into the causes of type 1 diabetes and is likely to do so for many years to come.



Access:
Open only through collaboration
Type:
Disease specific
Status:
Completed
Consent restrictions:
No restrictions


Associated Data Type Procurement Timeframe
There is no associated data for this collection.


Female

Infant (1 month - 2 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Female

Young child (2 - 6 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Male

Young child (2 - 6 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Female

Child (6 - 12 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Male

Adolescent (12 - 18 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Male

Child (6 - 12 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Female

Adolescent (12 - 18 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Male

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Female

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%


Female

Adult (> 40 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
PM tissue RT N/A Affected 100%

Diabetes mellitus type 1 (disorder)

Diabetes Alliance for Research in England (DARE)

Year Started: 2009

The DARE study consists of samples from diabetic patients, both type 1 and type 2 in the South West peninsula area (roughly Devon and Cornwall), predominately within the Exeter area. Sample collected at point of contact and data collected over time. The DARE collection was run alongside our EXTEND collection, concentrating on diabetic patients. EXTEND patients were recruited as controls to the DARE collection, and DARE diabetics were recruited to the EXTEND collection. Therefore, the majority of patients in DARE will have samples held within EXTEND, however, if diabetes is the main focus of a request to the Exeter biobanks, samples and data will come from the DARE collection. Please see http://www.diabetesgenes.org/content/diabetes-alliance-research-england-dare-previously-known-exeter-research-alliance-extra-stud for more information



Access:
Open only through collaboration
Type:
Disease specific
Status:
Completed
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Biomarker datasets 0 - 3 months
Clinical records 0 - 3 months
Cold ischemic time 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Genomic datasets 0 - 3 months
Physiological/biochemical measurements 0 - 3 months
Primary care records 0 - 3 months
Quality indicators 0 - 3 months


Male

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Male

Adult (> 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Female

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Female

Adult (> 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%

Diabetes mellitus type 2 (disorder)

Diabetes Alliance for Research in England (DARE)

Year Started: 2009

The DARE study consists of samples from diabetic patients, both type 1 and type 2 in the South West peninsula area (roughly Devon and Cornwall), predominately within the Exeter area. Sample collected at point of contact and data collected over time. The DARE collection was run alongside our EXTEND collection, concentrating on diabetic patients. EXTEND patients were recruited as controls to the DARE collection, and DARE diabetics were recruited to the EXTEND collection. Therefore, the majority of patients in DARE will have samples held within EXTEND, however, if diabetes is the main focus of a request to the Exeter biobanks, samples and data will come from the DARE collection. Please see http://www.diabetesgenes.org/content/diabetes-alliance-research-england-dare-previously-known-exeter-research-alliance-extra-stud for more information



Access:
Open only through collaboration
Type:
Disease specific
Status:
Completed
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Biomarker datasets 0 - 3 months
Clinical records 0 - 3 months
Cold ischemic time 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Genomic datasets 0 - 3 months
Physiological/biochemical measurements 0 - 3 months
Primary care records 0 - 3 months
Quality indicators 0 - 3 months


Male

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Male

Adult (> 40 years)

3001 - 5000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Female

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%


Female

Adult (> 40 years)

1001 - 3000 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 75% -99%
Plasma -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 26 - 50%

Diabetes mellitus type 1 (disorder)

UNITED - Using Pharmacogenetics to Improve Treatment in Early-onset Diabetes

Year Started: 2010

The UNITED study was a population-based study looking at individuals aged below 50 years, diagnosed with diabetes before the age of 30 years. Typically, such individuals will be diagnosed with Type 1 (T1DM) but a number of these individuals will in fact have a form of monogenic diabetes. Often, these subsets of diabetes respond better to treatments other than insulin, or no treatment at all. UNITED participants underwent a 3 step algorithm with progression to the next step being determined by their results. All participants had an initial UCPCR test, unless their diabetes treatment was diet only (and therefore producing insulin), to measure endogenous insulin. Participants that were UCPCR positive and producing insulin were tested for pancreatic autoantibodies to determine the likelihood of having type 1 diabetes. The final stage of the UNITED pathway was for those with negative autoantibodies and endogenous insulin production to undergo a genetic test for monogenic diabetes. If found to have monogenic diabetes, their diabetes treatment was reviewed and changed as appropriate. The majority of participants had T1DM: of 1875, 131 were found to have T2DM and 60 were found to have some form of MODY.



Access:
Open only through collaboration
Type:
Disease specific
Status:
Completed
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Biomarker datasets 0 - 3 months
Clinical records 0 - 3 months
Cold ischemic time 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Genomic datasets 0 - 3 months
Physiological/biochemical measurements 0 - 3 months
Primary care records 0 - 3 months
Quality indicators 0 - 3 months


Male

Infant (1 month - 2 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 100%


Male

Young child (2 - 6 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Child (6 - 12 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 0 - 10%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 100%


Male

Adolescent (12 - 18 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 100%


Male

Young adult (18 - 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Young adult (18 - 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 11 - 25%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Infant (1 month - 2 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 26 - 50%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 100%


Female

Young child (2 - 6 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 51 - 75%
Urine -60°C to -85°C N/A Not applicable 100%


Female

Child (6 - 12 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 0 - 10%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 100%


Female

Adolescent (12 - 18 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Young adult (18 - 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 26 - 50%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Adult (> 40 years)

101 - 500 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
DNA -60°C to -85°C N/A Not applicable 11 - 25%
Serum -60°C to -85°C N/A Not applicable 11 - 25%
Urine -60°C to -85°C N/A Not applicable 75% -99%

Maturity-onset diabetes of the young (disorder)

HARC (Exploring the genetics of renal development disease (HNF1B))

Year Started: 2012

The HARC study looked to compare patients with renal developmental disease due to mutations in the HNF1B gene and those with 17q12 deletions. HNF1B genetic abnormalities are the most common monogenic cause of renal developmental problems, but are also known to cause monogenic diabetes / MODY5. Participants provided urine and serum samples to the biobank, and a minority also undertook MRI scans to look for pancreatic developmental abnormalities.



Access:
Open only through collaboration
Type:
Disease specific
Status:
Completed
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Biomarker datasets 0 - 3 months
Clinical records 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Genomic datasets 0 - 3 months
Physiological/biochemical measurements 0 - 3 months
Primary care records 0 - 3 months
Quality indicators 0 - 3 months


Male

Child (6 - 12 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Adolescent (12 - 18 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Young adult (18 - 40 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Male

Adult (> 40 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Child (6 - 12 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Adolescent (12 - 18 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Young adult (18 - 40 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%


Female

Adult (> 40 years)

1 - 10 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Serum -60°C to -85°C N/A Not applicable 75% -99%
Urine -60°C to -85°C N/A Not applicable 75% -99%