Generation Scotland - Scottish Family Health Study [GS-SFHS]
GENERAL INFORMATION
| Name | Generation Scotland - Scottish Family Health Study |
|---|---|
| Acronym | GS-SFHS |
| Last update | 08/03/2010 |
Affiliation
Principal investigators
|
Andrew Morris (Prof. / Executive Principal Investigator)
|
Dundee University |
|
Anna Dominiczak (Prof. / Executive Principal Investigator)
|
Glasgow University |
|
David Porteous (Prof. / Executive Principal Investigator)
|
Edinburgh University |
|
Blair Smith (Dr. / Executive Principal Investigator)
|
|
|
Alan Wright
|
MRC Human Genetics Unit |
|
Colin Palmer
|
|
|
David Reid (Prof.)
|
Aberdeen University |
|
David St Clair
|
Aberdeen University |
|
Douglas Blackwood
|
Edinburgh University |
|
Gill Haddow
|
|
|
Graeme Murray
|
|
|
Harry Campbell (Prof.)
|
Edinburgh University |
|
Ian Deary
|
Edinburgh University |
|
Ian Ford (Prof.)
|
Glasgow University |
|
Jill Pell
|
Glasgow University |
|
John Connell
|
Glasgow University |
|
Mike Connor
|
Glasgow University |
|
Richard Sinnott
|
|
|
Rob Procter
|
|
|
Robbie Lindsay
|
|
|
Roland Wolf
|
Dundee University |
|
Shona Kerr (Dr./ Chair of Resource Management and Development Committee)
|
Edinburgh University |
|
Stuart Ralston (Prof.)
|
Aberdeen University |
Contact
|
Pamela Linksted (Dr./ Chief Operations Officer)
|
University of Edinburgh, Molecular Medicine Centre
Edinburgh EH4 2XU Email: pamela.linksted@ed.ac.uk 
|
Website
Funding agency
| Percentage | Category | |
|---|---|---|
| Scottish Executive Health Department, Chief Scientist Office | -- | -- |
BACKGROUND
Generation Scotland: The Scottish family health study (SFHS) aims to establish a family-based cohort of up to 50,000 individuals (including siblings and parent-offspring groups) across Scotland.
The SFHS will explore and identify genetic variants relevant to the pathogenesis of common complex diseases (such as cardiovascular disease, cognitive decline, mental illness) and pharmacogenetics research. The family study design will allow measurement of the heritability and familial aggregation of quantitative traits associated with these diseases, and will facilitate the discovery of genes and their variants.
Predicted health gains will include the targeting of disease prevention and treatment, and the development of screening tools based on the new genetic information. This will be complementary to other genetic epidemiology studies, such as UK Biobank, which are established to characterize genes and genetic risk in the population, but are not designed to contribute to gene discovery.
OBJECTIVES
To study a large group of families comprising 50,000 people from across Scotland, as a resource aimed at studying the genetics of health areas of current and projected public health importance (e.g. heart disease and mental health). This will be made available anonymously to Scottish researchers. Funding is currently available for the first phase, which aims to recruit 15,000 people.
METHODS
Legend
Yes
No
Unknown
|
General design
| Study design | Cohort |
|---|---|
| Type of participants | Families |
| Target or final number of participants | 25000 |
| Target or final number of families |
No information available |
| Target or final number of DNA | 25000 |
Participant selection / Characteristics of the population
Selection criteria
|
Age
|
Minimun: 18 years |
|
Country of residence
|
Scotland |
Recruitment procedures
1. The research team will contact General practices in Tayside and Glasgow identified through Scottish Practices and Professionals Involved in Research (SPPIRe) and invited to collaborate.
2. The research group will identify an independent party to assist with the approach of potential participants. The independent party, will work generate a list of eligible people, according to agreed criteria, from the Scottish NHS register (known as the CHI). Letters will be generated on a per-practice basis on practice headed note-paper, which will be delivered to the practice for signature. These letters will be returned to the independent party and then dispatched by post. Further reminder letters (maximum of two) will be dispatched as required. When the eligible person returns the tear-off slip agreeing to be contacted by the research team the individual's details will be sent from the independent party to the study team.
3. All of these potential participants will be screened by their GP, and individuals whom it might be inappropriate to approach (eg those with a serious or terminal illness; those unable to consent) will be excluded and replaced by another individual sampled at random. A log of excluded individuals, and the reason for their exclusion will be kept by the practice.
4. In addition, targeted approaches will be made to potentially eligible individuals whose details are held on the Walker Birth Cohort database. This is a database of over 48,000 births in Dundee between 1952 and 1966. This provides the opportunity to approach individuals and their families who are known to reside in the Dundee area and with a family structure that renders them eligible to participate. It also provides the opportunity to maximise the efficiency of recruitment by targeting larger local families in the first instance.
5. Their GP will contact the individual by mail, in conjunction with the independent party (see above) and invite them to participate in the study, if they can do so along with at least one and ideally more full siblings (and any other first degree relatives). This invitation will be to (a) participate in a research interview by a sociologist, (b) a research clinic visit and (c) agree to discuss the study with siblings with a view to possible participation. When the public consultation study is completed, and for all potential participants in Glasgow the invitation will only be to participate in the research clinic visit. The mailing will include basic information about the study, explaining the inclusion criteria, and seek their permission for a more detailed approach by telephone, if they are, or may be eligible.
6. We will encourage them to discuss participation in their family and to ask siblings and any other first-degree relatives, particularly parents, and others aged over 17 years whether they would be interested.
7. The proband will be asked to mail a return slip, indicating whether they are interested in the study and confirming their likely eligibility, in a pre-paid envelope to the independent party. They will be asked to return permission for further contact indicating a suitable time for research nurse to call them.
8. The independent party will pass the details of interested individuals to the research team, keeping a record of individuals who decline to participate, or indicate their ineligibility. Up to two reminders will be mailed to individuals who do not respond to the initial invitation.
Data Sources
| Cross-sectional | Repeated/continuous | |
|---|---|---|
|
Questionnaires to participants/respondents
|
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Direct physical measures
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Biological samples
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Medical paper
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Electronic databases
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Genealogical records
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Collection procedures
Data will be collected by trained research staff in clinics and primary care setting. Questionnaires will be both paper based (with subsequent optical scanning and electronic data capture) by tablet PC.
Follow up procedures
No information available
Baseline principal variables of interest
Health information
-
Diseases history - ICD-10
-
Familial disease history
-
Early life
-
Women's health
-
Quality of life
Physical / Biochemical measures
|
Body structure measures
|
Biochemical measures
|
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Body function measures
|
Sociodemographic Characteristics
|
Birth location
|
Parents birth location
|
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Ethnicity/Race
|
Gender
|
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Marital status
|
Date of birth
|
Socioeconomic Characteristics
|
Education level
|
Income
|
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Working status
|
Life habits / Behaviours
|
Physical activity
|
Smoking / Tobacco Use
|
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Nutrition
|
Alcohol intake
|
Physical environment
|
Passive smoking
|
Mobile phone use
|
Sample management
Biological samples
|
Blood
|
Buccal cells
|
|
Cord blood
|
Tissues
|
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Saliva
|
Urine
|
Biological samples format
| Fresh | Frozen | Dried (paper) | Other | Specification | |
|---|---|---|---|---|---|
| Blood |
|
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| Buccal cells |
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Genome-Wide Association (GWA) analyses
-
Plan to proceed to GWA analyses later
GOVERNANCE
|
Legend
Yes
No
|
Allow access to data or samples to external researchers
|
Data (questionnaire-derived, measured…)
|
||
|
Biological samples
|
STATUS
Current status
| Phase | Start | End |
|---|---|---|
| Preparation phase/Pilot | 2005 | 2008 |
| Recruitment / initial data collection | 2008 | 2011 |
| Follow-up of participants | -- | -- |
| Current number of participants recruited | 13000 |
|---|
More than 10,000
| Current number of collected DNA samples | 13000 |
|---|
More than 10,000
AVAILABLE DOCUMENTS
| Document type | Availability | |
|---|---|---|
| 1 | General study protocol | |
| 2 | Specific protocols/procedures (data collection, samples management, etc.) | |
| 3 | Questionnaires | |
| 4 | Physical and cognitive measures | |
| 5 | DNA processing | |
| 6 | Consent forms | |
| 7 | Pamphlet / project description | |
| 8 | Governance / ethics documentation | |
| 9 | Other |
COMMENT
In parallel to the original recruitment phase, there will be a "Public Consultation Study", to conduct an early and sustainable consultation programme to understand and explain the public reaction to genetics in healthcare, and their reaction to participation in research.
a. To explore potential participants views on recruitment, consent, withdrawal, feedback, confidentiality, patenting/commercialisation and governance.
b. To develop and discuss study materials, Participant Information Leaflets (PILs), consent forms, and study questionnaires.
c. To understand the origins and persistence of concerns about the collection, storage, access and use of bioinformation, seeking not only description but explanation.
d. To explore views on whether and why other family members would be willing to participate, and the associated ethical, legal and social issues.
e. To explore the relationship between the data to be collected (questionnaires, examination, tissues samples) and decisions about participation.
f. To make serious and consistent attempts to include those groups who are hard-to-reach because of their marginal position in society: low socio-economic groups, ethnic minorities and younger and elderly age cohorts.
General Information
| Name | Pre-Clinic Questionnaire (PCQ) |
|---|---|
| Last update | 08/25/2010 |
| Version or reference year | PCQ = v2.0 |
Questionnaire owner
- Generation Scotland
Contact
|
Andrew D Morris (Prof.)
|
University of Dundee, Division of Medicine and Therapeutics
Dundee DDI 9SY Phone: O1382 632569 Email: a.d.morris@chs.dundee.ac.uk
|
Utilization conditions
None
Information on validity
In progress
Methods
|
Legend
Yes
No
|
Respondent
-
Participant
-
Proxy
Administration environment
-
Over the phone
-
Hospital, clinic, university or recruitment center
-
Respondent / Proxy residence
-
Other
(Paper based PCQ completed by participant before attending the study clinic)
Administration mode
-
Auto administered
-
Auto administrated with face to face validation by trained personnel
-
Administrated by trained personel / Physician
Administration format
-
Paper questionnaire
-
Computerized
Administration language
- English
Documents
Available Format
NOTICE: HTML document format may differ slightly from the actual questionnaire. Please refer to the original PDF document for exact reproduction.
Comment
Web based PCQ is currently being prototyped along with a re-evaluation of the questionnaire content.
General Information
| Name | Pre-Clinic Questionnaire (PCQ) |
|---|---|
| Number of Question Blocks | 29 |
Questionnaire and Question Block List
Click on the
to see the block of questions related to a domain or a group of domains.
-
Block 1
-
- Sociodemographic Characteristics / Birth location / Subject's birth location
- Sociodemographic Characteristics / Residence / Residential History
-
Block 2
-
- Sociodemographic Characteristics / Ethnicity/Race
-
Block 3
-
- Sociodemographic Characteristics / Birth location / Subject's family's birth location
-
Block 4
-
- Sociodemographic Characteristics / Age/Birth Date / Subject's Relatives Age / Birth Date
-
Block 5
-
- Health Information / Familial Disease History (ICD10*) / Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism
- Health Information / Familial Disease History (ICD10*) / Diseases of the digestive system
- Health Information / Familial Disease History (ICD10*) / Diseases of the respiratory system
- Health Information / Familial Disease History (ICD10*) / External causes of morbidity and mortality
- Health Information / Familial Disease History (ICD10*) / Mental and behavioural disorders
- Health Information / Familial Disease History (ICD10*)
- Health Information / Familial Disease History (ICD10*) / Diseases of the circulatory system
- Health Information / Familial Disease History (ICD10*) / Endocrine, nutritional and metabolic diseases
- Health Information / Familial Disease History (ICD10*) / Injury, poisoning and certain other consequences of external causes
- Health Information / Familial Disease History (ICD10*) / Neoplasms
- Social Environment / Familial and social environment
-
Block 6
-
- Sociodemographic Characteristics / Birth location / Subject's family's birth location
-
Block 7
-
- Sociodemographic Characteristics / Age/Birth Date / Subject's Relatives Age / Birth Date
-
Block 8
-
- Health Information / Familial Disease History (ICD10*) / Diseases of the digestive system
- Health Information / Familial Disease History (ICD10*) / Diseases of the respiratory system
- Health Information / Familial Disease History (ICD10*) / Endocrine, nutritional and metabolic diseases
- Health Information / Familial Disease History (ICD10*) / External causes of morbidity and mortality
- Health Information / Familial Disease History (ICD10*) / Injury, poisoning and certain other consequences of external causes
- Health Information / Familial Disease History (ICD10*) / Mental and behavioural disorders
- Health Information / Familial Disease History (ICD10*)
- Health Information / Familial Disease History (ICD10*) / Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism
- Health Information / Familial Disease History (ICD10*) / Diseases of the circulatory system
- Health Information / Familial Disease History (ICD10*) / Neoplasms
- Social Environment / Familial and social environment
-
Block 9
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- Health Information / Medication Intake (ATC/DDD) / Alimentary tract and metabolism (A)
- Health Information / Medication Intake (ATC/DDD) / Blood and blood forming organs (B)
- Health Information / Medication Intake (ATC/DDD) / Cardiovascular system (C)
- Health Information / Medication Intake (ATC/DDD) / Genito urinary system and sex hormones (G)
- Health Information / Medication Intake (ATC/DDD) / Musculo-skeletal system (M)
- Health Information / Medication Intake (ATC/DDD) / Nervous system (N)
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Block 10
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- Health Information / Familial Disease History (ICD10*) / Diseases of the circulatory system
- Health Information / Familial Disease History (ICD10*) / Diseases of the musculoskeletal system and connective tissue
- Health Information / Familial Disease History (ICD10*)
- Health Information / Familial Disease History (ICD10*) / Diseases of the nervous system
- Health Information / Familial Disease History (ICD10*) / Diseases of the respiratory system
- Health Information / Familial Disease History (ICD10*) / Endocrine, nutritional and metabolic diseases
- Health Information / Familial Disease History (ICD10*) / Injury, poisoning and certain other consequences of external causes
- Health Information / Familial Disease History (ICD10*) / Mental and behavioural disorders
- Health Information / Familial Disease History (ICD10*) / Neoplasms
- Health Information / Individual Disease history / Diseases of the circulatory system
- Health Information / Individual Disease history / Diseases of the musculoskeletal system and connective tissue
- Health Information / Individual Disease history / Diseases of the nervous system
- Health Information / Individual Disease history / Diseases of the respiratory system
- Health Information / Individual Disease history / Endocrine, nutritional and metabolic diseases
- Health Information / Individual Disease history / Injury, poisoning and certain other consequences of external causes
- Health Information / Individual Disease history / Mental and behavioural disorders
- Health Information / Individual Disease history / Neoplasms
- Health Information / Individual Disease history
-
Block 11
-
- Sociodemographic Characteristics / Kinship
-
Block 12
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- Health Information / Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified / Symptoms and signs involving the circulatory and respiratory systems
-
Block 13
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- Health Information / Individual Disease history / Diseases of the musculoskeletal system and connective tissue
-
Block 14
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- Health Information / Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified / General symptoms and signs
- Health Information / Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified / Symptoms and signs involving the circulatory and respiratory systems
- Health Information / Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified / Symptoms and signs involving the digestive system and abdomen
- Health Information / Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified / Symptoms and signs involving the nervous and musculoskeletal systems
- Life Habits/Behaviours / Physical activity / Perception of physical health
-
Block 15
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- Life Habits/Behaviours / Physical activity / Activities/Exercise and Frequency
-
Block 18
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- Life Habits/Behaviours / Nutrition / Food intake and Frequency / Cereals, Bread, Starches
- Life Habits/Behaviours / Nutrition / Food intake and Frequency / Meat, Eggs, Fish and Alternatives
- Life Habits/Behaviours / Nutrition / Food intake and Frequency / Milk products
- Life Habits/Behaviours / Nutrition / Food intake and Frequency / Vegetables and Fruits
-
Block 19
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- Life Habits/Behaviours / Nutrition / Food intake and Frequency / Vegetables and Fruits
-
Block 20
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- Health Information / Medical Health Intervention (C239) / Other Healthcare Interventions / Other Healthcare Interventions, Promoting Health and Preventing Disease
- Life Habits/Behaviours / Alcohol use
-
Block 23
-
- Life Habits/Behaviours / Tobacco use
-
Block 24
-
- Physical Environment / Environmental exposures / Chemical environmental exposures / Passive Smoke Exposure
- Physical Environment / Occupational Exposures / Chemical Occupational Exposures / Passive Smoke Exposure
-
Block 25
-
- Socioeconomic Characteristics / Education level / Subject education level
-
Block 26
-
- Socioeconomic Characteristics / Working status / Subject Working status/history
- Socioeconomic Characteristics / Working status / Subject's partner working status/history
-
Block 27
-
- Life Habits/Behaviours / Physical activity / Activities/Exercise and Frequency
- Socioeconomic Characteristics / Working status / Subject Working status/history
-
Block 28
-
- Socioeconomic Characteristics / Income
-
Block 29
-
- Sociodemographic Characteristics / Household Status / Structure of the Household
- Sociodemographic Characteristics / Household Status / Subjet Household Status
-
Block 30
-
- Socioeconomic Characteristics / Income
-
Block 31
-
- Health Information / Medical Health Intervention (C239) / Physical/Physiological Therapeutic Interventions / Therapeutic Interventions on the Genitourinary System
- Health Information / Women's health / Menopause
- Health Information / Women's health / Menstruation
-
Block 32
-
- Health Information / Medication Intake (ATC/DDD) / Genito urinary system and sex hormones (G)
-
Block 33
-
- Health Information / Individual Disease history / Injury, poisoning and certain other consequences of external causes
General information
| Name | Physical and cognitive measures |
|---|---|
| Last update | 06/19/2009 |
| Collected at phase | Baseline, pre-clinic |
Contact
|
Pamela Linksted (Dr./ Chief Operations Officer)
|
Edinburgh EH4 2XU
Email: pamela.linksted@ed.ac.uk
|
Physical and cognitive measures collected
|
Legend
Yes
No
|
BODY STRUCTURES
Others body composition measures
(Body Fat Composition)
BODY FUNCTIONS
Memory functions (Logical Memory I; Digit-Symbol Coding; Logical Memory Delay)
Other specific mental functions
(Sensory-motor speed (Digit-Symbol Coding); Eysenck Personality Questionnaire; General Health Questionnaire; SCID interview)
Fluency and rhythm of speech functions
Speech fluency (Verbal Fluency)
Other measures of the voice and speech functions
(Mill Hill Vocabulary)
FUNCTIONS OF THE CARDIOVASCULAR AND RESPIRATORY SYSTEMS
Functions of the cardiovascular system
Electrical activity (Electrocardiogram (ECG))
Other measures of the cardiovascular functions
(Brachial Pressure, Dorsalis Pedis Pressure, Posterior Tibial Pressure)
Functions of the respiratory system
Respiratory functions (spirometry)
Administration mode
|
Legend
Yes
No
|
Administration environment
Hospital, clinic, university or recruitment center
Staff administering test
Professionals (nurses, clinicians, etc)
Interviewers/research assistants
Other
Documentation on procedures
| Administration language | English |
|---|
Standard operating procedures (SOPs) or reference information
General Information
| Name | DNA Processing |
|---|---|
| Study name | Generation Scotland - Scottish Family Health Study [GS-SFHS] |
| Last update | 05/15/2008 |
Contact
|
Lee Murphy (PhD)
|
Edinburgh EH4 2XU
Phone: 0131 537 3370 Email: Lee.Murphy@ed.ac.uk
|
| Utilization conditions | None |
|---|
Samples
|
Legend
Yes
No
|
| Sample name | Blood | Saliva | |
|---|---|---|---|
| Main laboratory | WellcomeTrust Clinical Research Facility Western General Hospital, Edinburgh, Scotland | WellcomeTrust Clinical Research Facility Western General Hospital, Edinburgh, Scotland | |
| Sample labels/traceability (% of samples) |
|
|
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| Pre-extraction sample storage format | Substrate storage condition |
|
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| Substrate storage period |
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| DNA extraction | DNA extraction method |
|
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| Automation of handling |
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| Protocols | |||
| DNA handling and storage | DNA diluent |
|
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| DNA concentration (ng/µl) | |||
| Storage conditions |
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| Protocols | |||
| DNA quantification | Methods |
|
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| Technical quality |
|
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| DNA quality control | Percentage of samples that are tested | 8.7 | 8.7 |
| DNA quality method |
|
|
|
| Protocols | 8 samples out of every 92 is run on a gel (to check for degradation) and on the UV spectrophotometer (to check for contamination). | 8 samples out of every 92 is run on a gel (to check for degradation) and on the UV spectrophotometer (to check for contamination). | |
| DNA analysis | Platforms |
|
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| Technical quality |
|
|
|
General Information
| Name | Information Technologies |
|---|---|
| Study name | Generation Scotland - Scottish Family Health Study [GS-SFHS] |
| Last update | 11/06/2008 |
Contact
|
Mark McGilchrist
|
University of Dundee
Dundee DD2 4BF Phone: +44 1382 420000 Email: m.m.mcgilchrist@dundee.ac.uk
|
Software
|
Legend
Yes
No
|
Software overview
| Biobanking areas covered | ePCQ - electronic Pre-Clinic Questionnaire, v1.0 | StarLIMS v2.10.11 | VIS - Volunteer Identification System, v2.0 | VMS - Volunteer Management System, v2.0 | eCRF - electronic Case Report Form, v1.0 | Biochemistry, v2.0 | PCQ Form Reader, v1.02 | PCS - Patient Contact System, v2.0 |
|---|---|---|---|---|---|---|---|---|
| Participant recruitment (ex: CATI, CRM) |
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| Data collection |
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| Sample collection, storage and processing |
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| Data repository | ||||||||
| Other |
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| Programming language | ePCQ - electronic Pre-Clinic Questionnaire, v1.0 | StarLIMS v2.10.11 | VIS - Volunteer Identification System, v2.0 | VMS - Volunteer Management System, v2.0 | eCRF - electronic Case Report Form, v1.0 | Biochemistry, v2.0 | PCQ Form Reader, v1.02 | PCS - Patient Contact System, v2.0 |
| Name and version of programming language | VB.NET | VB.NET | VB.NET | VB.NET | VB.NET | VB.NET | VB.NET | |
| Internal/external development | ePCQ - electronic Pre-Clinic Questionnaire, v1.0 | StarLIMS v2.10.11 | VIS - Volunteer Identification System, v2.0 | VMS - Volunteer Management System, v2.0 | eCRF - electronic Case Report Form, v1.0 | Biochemistry, v2.0 | PCQ Form Reader, v1.02 | PCS - Patient Contact System, v2.0 |
| In-house by IT department |
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| By an external company |
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| Shareability | ePCQ - electronic Pre-Clinic Questionnaire, v1.0 | StarLIMS v2.10.11 | VIS - Volunteer Identification System, v2.0 | VMS - Volunteer Management System, v2.0 | eCRF - electronic Case Report Form, v1.0 | Biochemistry, v2.0 | PCQ Form Reader, v1.02 | PCS - Patient Contact System, v2.0 |
| Freely available | ||||||||
| Purchaseable |
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| Needs extensive work | ||||||||
| Not for share |
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Software details
- ePCQ - electronic Pre-Clinic Questionnaire, v1.0
- StarLIMS v2.10.11
- VIS - Volunteer Identification System, v2.0
- VMS - Volunteer Management System, v2.0
- eCRF - electronic Case Report Form, v1.0
- Biochemistry, v2.0
- PCQ Form Reader, v1.02
- PCS - Patient Contact System, v2.0
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
Web form with VB.NET back-end.
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Internal/external development
-
In-house by IT department
-
By an external company (StarLIMS)
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
A client application which interfaces to the volunteer management service and the Health Service registration database for identification of volunteers. This allocates the unique identifier used by the Health Service.
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
Consists of multiple clients and 'web' services within a wider service oriented architecture. It is used to complete recruitment of responding probands, and manage recruitment of designated family members and recording of family pedigree. Clinic appointments are also managed.
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
Store-and-forward client to permit offline use
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
-
Other
(Electronic collection of biochemistry sample results from National Health Service laboratory web service.)
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
This client application polls the laboratory web service every 3 hours for biochemistry sample results and places these within the baseline-phenotype data repository.
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
Performs OMR of paper PCQs submitted by volunteers
Biobanking areas covered
-
Participant recruitment (ex: CATI, CRM)
-
Data collection
-
Questionnaires (ex: CAPI)
-
Physical and cognitive measures
-
Sample collection, storage and processing
-
Collection
-
Sample bio-repository management system (ex: sample storage management software)
-
LIMS (ex: biochemical analysis, DNA extraction, genotyping)
-
Data repository
-
Data warehousing
-
Study monitoring (ex: quality control)
-
User data / sample request management
Name and version of programming language
VB.NET
Internal/external development
-
In-house by IT department
-
By an external company
Shareability
-
Freely available
-
Purchaseable
-
Needs extensive work
-
Not for share
Supplementary informations
Consists of two client applications and a 'web' service within a wider service oriented architecture. The applications support postal recruitment of probands by electronic mediation with primary care services and National Health Service registration databases.
Comments
Overall study management is handled by Windows client applications, web forms and 'web' services using a distributed architecture. The applications/services offer support for precise processes within the family-based study and the local health service and are peculiar to, but generally applicable to this environment.
