Overview

WHAT IS A BIOBANK/BIOREPOSITORY? [Click to view PowerPoint presentation 14_1221_GA_Biobank.pdf]

A biobank is a collection of human tissue samples and medical information about donors, which are stored for long periods of times and are used for research studies.

A ‘biorepository´ is the collection and storage of human blood or tissue samples. They are kept in large freezers to keep the samples usable. Usually, people who donate blood or tissue samples to a biorepository will also fill out a questionnaire. When the researchers go to use the samples for research studies, the samples are not very useful unless they know something about the person it came from.

The samples and the information come from donors. Donors are people who voluntarily decide to take part in the biobank. They give a blood or tissue sample or information about themselves for free. Usually, when someone wants to donate tissue or information about him or herself to a biobank, it’s because they have a disease or condition and they want to help researchers who are looking for new treatments or for a cure for their disease.

 

WHY ARE THEY IMPORTANT?

Biobanks are a way in which ordinary people, as well as patients, can become involved with medical research.  By donating biological samples and specimens, participants can help accelerate research studies and find treatments for diseases.

Furthermore, the structure of biobanks fosters cross-collaboration between disease advocacy organizations and research scientists. Biobanks produce a synergy that hastens the research process. Making treatments or cures to genetic conditions attainable in the near future.

If you or your loved ones are diagnosed with an illness or disease tomorrow, you will want to go to the pharmacy and pick up the right prescription.  However, an effective treatment may not be available yet.  Discovering and developing the right treatments requires volunteers to step forward and offer their health information to researchers. Imagine if all of us offered all of our health information so that there was no lack of health data?

Right now health data are not readily available.  Let’s offer this great resource to all, and not lock it down with one researcher or company!

 

To see where biobanks/biorepositories fit into the drug development process, visit NETS! NETS stands for Navigating the Ecosystem of Translational Science and provides a webmap of drug development complete with descriptions and resources for each step of the process! Click here to access the full view of NETS.


Contacting Biobanks and Biorepositories

Patients, unaffected participants, and citizen scientists have access to many biobanks and biorepositories through online databases. Independent biobanks often have their own webpages where the public can initiate contact. These biobanks usually have secure pathways for participants to donate biological specimens for research use. Visit our resources page to find a handful of accessible online biobanks and biorepositories.

 

Starting a Biobank

Likewise, advocacy organizations play a key role in the advancement of therapies and treatments for diseases and are in the best position to create a biobank that can help accelerate solutions. In the beginning, a lot of planning is required to guarantee your biobank’s success and sustainability. Consider the following:

  • What information should be collected? How?
  • How/where will the information be stored?
  • Who will manage the collection?
  • Who can access the collection?
  • Data only or data with biological samples?
  • Who will advise you?
  • Resource considerations
  • Financial considerations

For more specific information on how to start a biobank, click here to visit a related WikiAdvocacy page or visit our Getting Started tab.