About the VBD

FIND, the international alliance for diagnostics, seeks to ensure equitable access to reliable diagnosis around the world. We connect countries, funders, decision-makers, healthcare providers and developers to spur diagnostic innovation and make testing an integral part of sustainable, resilient health systems.

To offer a wide audience visibility on existing biological resources, we have created the FIND Virtual Biobank Directory (VBD). Funded by Unitaid, the VBD is an open-access directory of searchable information on collections hosted by FIND, as well as other organizations and networks worldwide. The VBD is a free-of-charge tool that allows users and sample owners to connect directly, or via FIND on request.

Samples from patients with the following diseases are planned to be included in the VBD: COVID-19, tuberculosis, malaria, hepatitis C, HIV, fever-related infections (dengue, Ebola, haemorrhagic fever, Lassa fever, typhoid, West Nile fever, yellow fever), Zika, and selected neglected tropical diseases (Buruli ulcer, Chagas disease, chikungunya fever, cutaneous leishmaniasis, human African trypanosomiasis, visceral leishmaniasis, schistosomiasis). Additional diseases may be included in the future.

In the first instance, the VBD will prioritize COVID-19 collections.

FAQ

Here you will find a collection of our frequently asked questions (FAQ). These questions below relate to FIND Virtual Biobank Directory (VBD) in general, and how to search and register on such Directory. This Website and its features are provided “AS IS” and the content and functionality may be changed whenever and however FIND so decides. FIND makes no representations or warranties, whether express or implied, including implied warranties of merchantability, fitness for a particular use or non-infringement. Specifically, FIND makes no representation or warranty that the Website will meet user’s individual needs, or that service will be timely, uninterrupted, secure, virus-free or error-free. The user understands that any information or data accessed or downloaded through the Website is done at the user’s sole risk, and that the user will be responsible for any damage or loss that may occur due to use of the Website and any of its features. FIND expressly disclaims all liability or responsibility to any person in respect to use of the FIND Virtual Biobank Directory. Any sample request will be governed by relevant underlying contract and terms and conditions. FIND expressly disclaims any liability or responsibility to any user for any loss or damage arising out of any event or events arising from the transactions.

General Questions

• What is the FIND Virtual Biobank Directory?

It is a list of specimen collections worldwide. 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 FIND Virtual Biobank Directory is for biomedical researchers from academia or industry. It is intended as a resource through which researchers can find samples relevant for their research.

• How does it work?

Anyone who stores or collects specimens can register on the FIND Virtual Biobank 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 another Directory?

The scope of the Virtual Biobank Directory, developed by FIND, is to cover a specific set of infectious disease areas, including neglected tropical diseases. Existing Biobank Directory initiatives are either too generic or focused on chronic diseases or on rare genetic diseases. There is a need for visibility of collections in the area of infectious diseases. The VBD has started being populated with COVID-19 collection information, however COVID-19 is not the only disease in the scope of this Directory. Other diseases are tuberculosis, HIV, Hepatitis, Fever (including Zika, yellow fever, hemorrhagic fevers) and parasitic tropical diseases (including schistosomiasis, onchocerciasis, trypanosomiasis). FIND being the international alliance for diagnostics, this directory is also aiming to foster research and collaborations in the specific field of diagnostics for infectious diseases. Efforts to make information on collections in these diseases available on the VBD will start in Q3 2021.

• How was the idea of the VBD born at FIND?

The idea of a free of charge and open access Virtual Biobank Directory hosted by FIND came from the Neglected Tropical Diseases department of FIND. Given the circumstances brought by the pandemic and urgent need for COVID-19 samples, the first disease on focus is COVID-19.

• Is there any relationship between this VBD and the governance of the collections?

No, the governance of each collection belongs to its hosting organization/custodian. FIND is not involved in the governance, except of course, for the collections that have been developed by FIND and that can be found on the VBD as “FIND collections”. For any other collection, the custodian organization and/or network identification appears with the collection.

• Does FIND acquire any data on the collections?

No, the detailed data, at individual sample level, of each collection, remain with the hosting organization. They are not uploaded on the VBD, and FIND does not have access to them

• 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.

• Does FIND facilitate and acquire any data on sample requests?

No, FIND only makes the information available on the VBD and each organization or researcher who is interested in having access to samples from one or more collections, has to contact the hosting organizations directly (contact details can be found on the VBD). FIND is not informed about any request or agreement between users of samples and hosting organizations.

• Does FIND have any responsibility on the collections?

No, FIND does not undertake to do any due diligence on the collections that are part of the VBD. The objective of the VBD is to provide a central directory to increase the visibility of collections in the disease areas that are described above. The responsibility of fulfilment of ethical and legal obligations remains with each hosting organization.

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

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

• Does FIND have any right on the collections?

No. As described above, FIND has absolutely no right on any of the collections, with the only exception of the collections that have been developed by FIND itself.

• Who would have Intellectual Property rights on the innovations developed using materials registered in the VBD?

Assessing Intellectual Property rights does not fall within FIND’s role in the VBD. It is the responsibility of both requestors and sample owners to agree on the terms of any collaboration. Yet FIND does encourage and advocate for ethical transfer agreements between both parties.

Registration Questions

• Can I register my organization or company?

Any specimen collection custodians are encouraged to register. If you aren’t sure, get in touch.

• What benefit does being in a network bring?

We want to make the presentation of your organization 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 networks.

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

The FIND Virtual Biobank 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 which 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 specimen collection, tick this field. For example, this could be following a validated method or checking a random sample for viability or integrity etc.

• I’ve just registered but I can’t find myself when I search the FIND Virtual Biobank 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.

• 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. If this will still take too long, please contact us about uploading the information.

• 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 retrieve it from your database. If you can’t make available 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.

• 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.

• What is a collection?

Collections are groups of samples from the same disease and timeframe, with the same consent, same processing method(s) and data available.

• Should I register saliva/DNA/Dried Blood Spots etc.?

Yes, we are interested in building a wide picture of the specimen capacity available. The more information available the better.

• We do not hold materials from patients, but we hold pathogen strains and derived products. Can we still be part of the VBD?

Yes. Pathogen strains and their derived products are absolutely of interest to researchers and diagnostic developers for infectious diseases.

• I work with numerous biobanks – should I register as a biobank or as a network?

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

• I have not received my registration confirmation email.

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

Search Questions

• Are biobanks required to share samples?

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

• 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.

• Can I apply for samples using the FIND Virtual Biobank 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.

• My search is not yielding any results.

Please get in touch as we may be able to help.