January 12, 2017

FAQ

General

What is the tissue directory?

It is a list of human tissue 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.

Who is it for?

The 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.

How does it work?

Anyone who stores or collects human samples can register on the 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.

Why is it needed?

Human tissue samples with consent for research are precious donations that should be put to good use. The 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.

Does this mean I can apply for samples online?

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.

Will patient data be available online?

Absolutely not. We just display the type of data that Biobanks have the ability to collect. This is called metadata

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.

Why are they supporting this?

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.

Searching

My search is not yielding any results

Have you tried looking at our SNOMED-CT terms list? It might be worth trying alterative terms. If you still can’t find it please get in touch as we may be able to help.

Can I apply for samples using the directory?

No, we are here to let you know who has relevant samples; it’s up to you to contact the biobank to facilitate access.

The Biobank I have messaged has not responded.

Sorry! We are not responsible for enforcing communication, but if you let us know the address you’ve tried we can make sure it’s up to date.

Are Biobanks required to share samples?

No, all biobanks will have different access requirements and they can decide on a case by case basis.

How do I know what protocols were used to generate the sample?

By contacting the Biobanks. We will be working towards quality and standardisation in the future but for now it’s worth dropping them a line and explaining your requirements.

Directory Registration

Can I register my organisation or company?

Any UK-based Tissue custodians are encouraged to register; this includes those that can collect in the UK and those that have RTB status. If you aren’t sure get in touch.

I have been told I have to register – what does this mean in practice?

In order to be classed as registered we ask that you are discover-able, this means adding sufficient profile and collection information to make your resource visible to the community. If you are unsure, don’t hesitate to contact us. 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

I’ve just registered but I can’t find myself when I search the directory?

Have you registered all the diseases you represent properly? All searches are based on SNOMED-CT terms. If you’re struggling please get in touch.

Any other queries? Contact us.

A service I offer is not listed.

Please get in touch with what services you offer and we can make sure we add them to the Directory.

I have not received my registration confirmation email

Please get in touch with your registration email address and we’ll look into it.

I work with numerous Biobanks – should I register as a Biobank or Network?

It really depends on how you want to display yourself as an organisation. It is easy to connect biobanks as a network later if you change your mind.

What does macroscopic assessment mean?

What percentage of the tissue sample is affected by the disease, for example 90% of the tissue is malignant or infected.

I have too many samples to add them all; it will take too long.

Firstly, once you’ve added one sample row you can copy it and make changes quickly that way, e.g. from male > female. See our video on this method. If this will still take too long please contact us about uploading the information.

What does “percentage” on the “add sample set” page mean?

We want to know roughly how many out of the whole set have any particular conditions/characteristics, e.g. 50% saliva, 50% plasma.

What is a sample set?

A set of samples will be in the same collection, have the same sex, age range, and material preservation conditions.

What does “Associated data” mean?

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.

Do you facilitate sample access?

No, we provide the means to contact the people who have relevant samples. Biobanks manage requests on a case by case basis.

What disease term should I use?

You should think about what someone might be searching for when they approach the site; please be as specific as possible. Please get in touch if you are unsure and we can advise.

My disease term isn’t listed

Please double check our list of SNOMED-CT terms, if it’s definitely not there please get in touch with what you need.

What is a collection?

Collections are from the same disease and time-frame, with the same consent and data available.

Should I register saliva/DNA/hair/nails etc. ?

Yes, we are interested in building a UK-wide picture of the human sample capacity we have. The more information we have the better.

What benefit does being in a Network bring?

We want to make the presentation of your organisation as flexible as possible. Being in a network allows you to present yourself differently, acknowledge adopted standards and also show that you are working collaboratively. You are able to be in more than one network.

I don’t have the resource to provide samples to external researchers – why should I register?

The 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

What does “Quality indicators” mean?

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.