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.