This document provides an overview of a webinar titled "Global Perspective on Biobanking and Access to Samples" that took place on June 23, 2017. The webinar featured presentations from experts in biobanking from the United States, Netherlands, Spain, Australia, and other countries. They discussed topics such as finding and accessing biospecimen data internationally, rare disease samples, academic biorepository operations, and improving biospecimen consent processes. Attendees provided positive feedback and questions on incentivizing sharing of rare disease samples and data, locating rare disease specimens, and collaborating with patient groups.

1. Global Perspective on Biobanking
and Access to Samples
June 23, 2017 at 10AM EDT
Sponsored by the NIH
Data Science Special Interest Group

2. Global Perspective on Biobanking and Access to Samples
June 23, 2017 at 10AM EDT
Sponsored by the NIH Data Science Interest Group
• List of panelists:
• Jonathan Pevsner, Professor, Dept. of Neurology, Kennedy Krieger Institute. Dept. of Psychiatry and
Behavioral Sciences, Johns Hopkins Medicine (USA). Presentation: Biobanking User’s Perspective and an
Overview
• David van Enckevort, Project Leader, Biobanking and Biomolecular Resources Research Infrastructure-
European Research Infrastructure Consortium (Netherlands). Presentation: FAIR (Findable, Accessible,
Interoperable and Reusable) Data and Sample Access
• Manuel Posada de la Paz, Director, Research Institute for Rare Diseases (Instituto de Investigación en
Enfermedades Raras), a member of the EuroBioBank (Spain). Presentation: Rare Diseases Biological
Samples: Small Collections and Research
• Kerry Wiles, Program Director, VUMC Tissue Repository, Cooperative Human Tissue Network, Western
Coordinator (USA). Presentation: An Academic Prospective Procurement Repository: From Donor to Bench
• Jim Vaught, Editor-in-Chief, Biopreservation Journal, past President of the International Society for Biological
and Environmental Repositories (ISBER), on the board of directors for ISBER and National Disease Research
Interchange (USA). Presentation: NIH and ISBER Perspectives on Specimen Locators
• Daniel Catchpoole, Director of Kids Research Institute, The Children's Hospital at Westmead (Australia).
Presentation: The Australian Experience, Issues and Solutions

3. Introduction: Yaffa Rubinstein
It is an honor and a pleasure to have such a distinguish experts and leaders in the field of biospecimens and
medical informatics participating in this symposium. On behave of the Data Science steering committee, I would
like to thank our speakers for their participation and for their contribution. I want to thank everyone who
registered to precipitate in this discussion, I also want to thank the Library of Medicine and Dr. Mike Huerta for
sponsoring this session.
As we all know, biorepositories are essential resources for personalized medicine research. In fact,
biospecimens are one of the major components of the “ALL of US” program and the foundation of precision
medicine, which includes discovery of new drugs and novel biomarkers and development of personalized
molecular diagnostics. They enable us to study diseases over long periods of time, as well as healthy people.
Data from biospecimens combined with health information can help researchers to continue discovering
individual differences that contribute to disease and response to treatments.
We can’t emphasize enough that biomedical research is in much demand of high quality biospecimens and the
associated molecular data and the link to the clinical data that is collected through patient registries.
During this session, we would like to cover some aspects of rare disease specimens which have a tremendous
hurdle to overcome which is inherent by the mere fact that they are rare.
And finally, we must remember that the patient is the center for this endeavor. They are donating the
specimens, so the quality of life improves for all.
We need to keep the communication open between the patients who donate the specimens, the investigators
who use the specimens, and the clinicians who use their knowledge and finding to treat their patients.
Thank you and without further ado I would like to invite Dr. Jonathan Pevsner to give the first presentation.

4. Questions submitted for the session
• How to incentivize sharing samples and data?
• Unable to locate rare disease samples--what are barriers to locating rare disease specimens,
even when they exist?
• Consents for biorepository specimens may not support current research questions--what can
be done to improve the consenting process to increase the value of biorepositories?
• How can we identify sources of rare disease specimens and incentivize sharing?
• How do we properly give credit for those involved in the arduous process of working up
biospecimens and then contributing to biobanks?
• Small RD biobanks are struggling to keep their collection, due to lack of resources. As a
result, implementing standard terminology and Common Data Element are not on top of their
priority. This is a major obstacle for specimens/data sharing and collaboration and
reproducing high quality research studies. What can be done?
• Patient registries that collect patient medical information over the course of a long time
following their response to medication and treatment often combine data generated from
specimens donated by the patients. How we can collaborate with the patient advocacy groups,
or directly with the patients, to increase donation with broad consent to facilitate
collaboration across diseases?
We encourage people to send their comments and feedback

5. Comments and feedback:
• Have the speaker on site rather than presenting remotely.
• I did not see a link to the presentations from the 6/23 International Biorepository ‘Global
Perspective on Biobanking’ webinar. I would like to share them with my NIH colleagues
• Thank you, for alerting me to the opportunity to learn about this topic which is so important
for all of us to advance our understanding of rare diseases.
• …it looked like a really big turnout. There’s clearly a lot of interest in this topic.
• It would have been nice to have more time for questions/discussion.
• Create a centralized resource listing the various biobanks and stakeholders
• Find a forum to explore the questions that were raised before and during the event (and
after too).
• I attended with great interest your mini workshop on Global Perspective on Biobanking and
Access to Samples. Are the slides presentations archived and available for viewing? Thank
you.

6. Comments and feedback:
• Thanks for an informative webinar. When will the slides be posted?
• I enjoyed this so much and found it extremely informative
• Thanks to the whole team responsible for the organization of this webinar. It was a pleasure
to collaborate with all of you
• It was fun….
• I greatly appreciate the initiative of this webinar series. I already have experience in
biobanking; however, this webinar demonstrated the impact that biobanks have in
translational research of specially rare diseases. …I hope you plan future seminars specially
for the intramural program and leverage the existing expertise in biobanking at the
NIH. Thanks,
• Thanks for organising a great webinar yesterday. It was worth staying up for.
• Thank you very much for organizing the international biorepository symposium. … It would
be great to have an opportunity to discuss further how our program can serve as a helpful
model for the biobanking community. Best wishes,
• Congratulations on a wonderful seminar. It is very useful information for an FOA I’m
leading.

8. To Subscribe to Data Science SIG
: https://list.nih.gov/cgi-bin/wa.exe?SUBED1=nih-datascience-l&A=1