*Registration for this pre-conference workshop is in addition to the regular meeting registration and is priced at $95. You can purchase registration for this session at the same time that you purchase your meeting registration.
Chairpersons: Tim Sharpe, Judita Kinkorova
Session Schedule and Session Descriptions:
1:00pm – 1:05pm: Introductions
1:05pm – 1:20pm: ISBER Tools – International Repository Locator
Presented by Joanne Demchok, NCI
The availability of a searchable (online) repository locator, is crucial to research infrastructure. To maximize the value of a specimen or collection, a researcher must be able to locate it. In addition, to generate data that contains statistical rigor, researchers may need to locate and access specimens from multiple repositories. An international repository locator (IRL), containing multiple repositories, would increase accessibility of repositories among key stakeholders including ISBER members, researchers, funding bodies, governments, and private industry.
The Working Group currently includes ISBER members from nine countries: Australia, France, Germany, Italy, the Netherlands, Qatar, Switzerland, the United Kingdom and the United States of America, with collective expertise in informatics, repository management, database management, and online locators.
1:20pm – 2:20pm: How to Write an Informed Consent Document
Presented by Helena Ellis, Biobanking Without Borders
All too often consent forms are written in language that is difficult to understand, with lots of legalese to fulfill regulatory requirements but without significant attention as to whether or not the form actually imparts key information to participants in an understandable manner. In the US the average person reads at the 7th or 8th grade level, so how can we make documents and the risks of genetic tests understandable? It takes an interest and time to review and revise the typical consent form, but the payoffs are substantial. There are many published guides and tools to help researchers write a comprehensible, reasonable length consent form, with simple words and conversational language. This workshop will provide easy to implement, step by step instructions for to write clear biobanking consent forms based on published health literacy principles.
2:20pm – 2:30pm: Questions and Answers
2:30pm – 2:45pm: Coffee Break
2:45pm – 3:45pm: Cold Chain Management
Presented by Kathi Shea, Brooks Life Sciences
Time and temperature are two variables known to impact sample integrity. In this course we will focus on the approaches for managing the cold chain throughout the lifecycle of a sample. Various methods and tools that can be used for selection and qualification of shipping containers, work stations and storage units will be discussed, along with approaches that can be used for measuring and monitoring of temperature during sample acquisition, processing, handling, storage and distribution.
3:45pm – 3:55pm: Questions and Answers
4:00pm – 5:00pm: Breakout Discussions (Interactive Groups)
- Learn how to write a biobanking informed consent form in plain language based on published health literacy principles and toolkits
- Identify the methods of Cold Chain Management from sample collection through processing, storage, and shipping operations
- Describe new technologies and innovations in harmonizing approaches to evolving challenges in biological and environmental repositories