Here you will find a collection of our frequently asked questions (FAQ).
Read on for answers to frequently asked questions relating to how to search and register on the UK Tissue Directory. At the end you will find some general information about the project.
UK-based human sample custodians are encouraged to register; this includes those that can collect in the UK and those that have Research Tissue Bank (RTB) status. If you aren’t sure, get in touch.
The UK Tissue Directory is as much about promoting visibility of resources than anything else. This is to prevent duplication of work. Under collection information there is a field called Access condition under this you can state if your resource is:
- Open to applicants
- Open in response to specific calls
- Open only through collaboration
- Data access only
- Access restricted at present
- Closed to access
In order to be classed as 'registered' on the UK Tissue Directory, we ask that you provide sufficient profile and collection information so that your resource appears in search results. If you want to refer people to your profile you can use the URL of your profile page which looks like this: https://directory.biobankinguk.org/Profile/Biobank/GBR-x-xxx
All registered sample resources can be found on the Biobank A-Z page. However if you have not added sample sets to your collections, your samples/resource will not appear in Directory search results.
Please check the inbox and spam folder of the email address you used to register. If you still can't find it, please get in touch with your registration email address and we’ll look into it.
If you provide a service that collects samples based on demand from specific studies, then please add 'Capabilities' to your Sample Resource/Biobank.
Collections are from the same disease and time-frame, with the same consent and data available.
If you keep any records that would indicate the quality of the sample, tick this field. For example, this could be following an ISO protocol or checking a random sample for yield etc.
We want to know roughly how many out of the whole set have any particular conditions/characteristics, e.g. 50% saliva, 50% plasma.
The UK Tissue Directory uses SNOMED CT to categorise disease and material types. You should think about what someone might be searching for when they approach the site; please be as specific as possible while keeping to SNOMED CT codes.
The UK Tissue Directory uses SNOMED CT terms for disease and material types. Please cross reference your term with the SNOMED CT term, and use the latter during registration. If the UK Tissue Directory fails to provide the SNOMED CT option you are looking for, please contact us.
A set of samples will be in the same collection, have the same sex, age range, and material preservation conditions.
Firstly, once you’ve added one sample row you can copy it and make changes quickly that way, e.g. from male > female. We provide an API which allows for the bulk upload of collection and sample information, depending on your sample management software. Contact us if you would like to explore this option.
We want to show what data you have for the sample and how long it would take you to get it. If you can’t get any of the data listed don’t tick anything. It doesn’t matter how long it takes, it’s just to make the researcher aware.
Yes, we are interested in building a UK-wide picture of the human sample capacity we have. The more information we have the better.
Please get in touch with what services you offer and we can make sure we add them to the UK Tissue Directory.
No, we provide the means to contact the people who have relevant samples. Biobanks manage requests on a case by case basis.
We want to make the presentation of your organisation as flexible as possible. Being in a network allows you to present yourself differently to researchers, so associated collections which work collaboratively, and/or adopt the same standards can be easily found. Sample Resources are able to be in more than one network.
The answer to this question depends on your needs and circumstances. If you are a biobank which has access control over many studies/collections, you may want to register as a Sample Resource and add these collections. However, if individual custodians are responsible for access control over specific studies/collections, then you may want to register as a Network and add each collection as its own Sample Resource.
The samples in the UK Tissue Directory use SNOMED CT terms. It is worth checking what the 'common' name is within SNOMED CT browser and searching for alternative terms.
Please remember there are two types of collections when using our search - 'Access existing collections' (i.e. stored samples) and 'Require samples to be collected' (i.e. service to arrange future collections).
If you are still unable to find what you need, then it may be there are no registered samples for that disease or material type. If this is the case we recommend:
- searching the most relevant samples (i.e. similar disease, body function, different material) and contact the Sample Resources/Biobanks which come up. They may have what you require but haven't registered the sample collection or capability yet. Or, they might be open to starting a new collaboration to collect the samples for you.
- checking our Biobank A-Z. Here you can filter the list by key word and sometimes the Sample Resource/Biobank will include additional disease and material types in their description but won't have registered the collection yet.
Unfortunately we are unable to enforce communications from Biobanks/Sample Resources. However, if you haven't heard back:
- It's always worth contacting an additional time in case your email has been overlooked.
- Many of the Sample Resources/Biobanks provide their phone number on their profile page and so you can call them.
- Often researchers contact us for sample requests instead of contacting the Sample Resource/Biobank directly. Make sure you have used the button 'Add to Contact List' to contact the intended recipient.
Also please bear in mind many Biobanks have a small number of staff, or if contacting a Study or Trial, other projects might be prioritised by the custodian. So sometimes it can take up to a week for them to contact you back.
No, we are here to let you know who has relevant samples; it’s up to you to contact the sample resource to facilitate access.
No, Sample Resources will have different access requirements, conditions and procedure. They decide on a case-by-case basis after application, and often will have a review process which judge the application on scientific merit or by ethical considerations.
Find out this information by contacting the Sample Resource/Biobanks and explain your requirements.
It is a list of human sample collections in the UK. It doesn’t detail every last sample, but gives a good indication on the types of samples each institution holds.
A sample resource is a organisation or project which collects and stores human samples for research purposes. Other names include biobank, biorepository, tissue bank, cohort study, and clinical trial. We use the term ‘sample resource’, because we feel the term is more inclusive than ‘biobank’.
The UK Tissue Directory is for biomedical researchers from academia or industry. It is intended as a resource through which researchers can find samples relevant for their medical research.
Human samples with consent for research are precious donations that should be put to good use. The UK Tissue Directory is here to make sure researchers can locate the samples to enable their research. Without access to human samples, medical research would be severely hindered.
Anyone who stores or collects human samples can register on the UK Tissue Directory. We classify these collections by disease, age and sex. Researchers can then search for the disease they study to see who has relevant sample collections.
Absolutely not. We just display the type of data that Biobanks have the ability to collect. This is called metadata
Not necessarily. You need to contact the individual biobanks and discuss the application process with them, some of them will be online, but we don’t facilitate this.
The UK Clinical Research Collaboration (UKCRC) was established in 2004 with the aim of re-engineering the clinical research environment in the UK, to benefit the public and patients by improving national health and increasing national wealth.
The Partnership brings together the major stakeholders that influence clinical research in the UK. It includes the main UK research funding bodies; academia; the NHS; regulatory bodies; the bioscience, healthcare and pharmaceutical industries; and patients.
The UKCRC were the founding funders of the UK Tissue Directory.
The UKCRC Experimental Medicine Funders Group has a vision for funded collections of human tissue and biosamples which is to:
‘…maximise the value of human tissue samples and resources while minimising duplication of effort. This requires better characterisation of tissue samples…and increased linkage to accurate clinical data. Sample collections must then be made more easily discoverable and accessible for use in high quality, ethical research’.
In order to achieve this vision the funders have identified the need for systems to make collections discoverable. The aim of the project is to prevent duplication of effort and make better use of existing capabilities.