How do I register my human sample collections?

UKCRC funders are encouraging tissue custodians to register on our directory. This is not just about sharing samples, its about preventing them being collected again, creating a more efficient UK research environment.

This may seem like a daunting task; but there’s no need to fret – we’re here to help. Please contact us for advice and support.

If you are preparing to register, it’s worth bearing in mind there are 4 steps (you can watch the process on our demo videos). These can be done at any time.

1. Create account (we’ll send you a link to confirm your account) – Please note it is currently only possible to associate one email address to one Biobank.

2. Complete Biobank information – add general information about your resource.

3. Add Collections – These are defined by disease, timeframe, consent and associated data.

4. Add Sample sets – These are defined by sex, age, material and preservation type.

As we are aware it takes work to get this information together, we’ve made overviews of the registration pages and a user guide:

Registration Guide

Directory explanatory Videos

Find out all about the comprehensive UKCRC Tissue Directory within this section. Most of the content is via explanatory videos that can also be viewed on our youtube channel.



FAQ

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.