Links to biospecimen resources:
The Wales Cancer Bank: http://www.walescancerbank.com/
The Chernobyl Tissue Bank webpage: http://www.chernobyltissuebank.com/
National Gaucher foundation: http://www.gaucherdisease.org/
Biobank information site: http://www.labautopedia.com/mw/index.php/Biobank_information_sites
From: Rubinstein, Yaffa (NIH/OD) [E]
Sent: Wednesday, July 13, 2011 7:53 AM
To: List BIOSPECIMENS
Subject: New! Biospecimens/Biorepositories: Rare Disease-HUB (RD-HUB) Web Site
We would like to introduce you to our new improved site for the Biospecimens/Biorepositories Web site: Rare Disease-HUB (RD-HUB) of the Office of Rare Diseases Research (ORDR) http://biospecimens.ordr.info.nih.gov/. The purpose of this site is to have a portal for the researchers to locate and inquire on the availability of specimens from the different existing biorepositories around the globe. For the repositories who are interested in sharing their inventory, this site can serve them well by letting researchers check whether the specimens with the specific requirements they are looking for is available, before contacting the repository. We would like to facilitate global collaboration and interaction among researchers and between the various resources and the scientific community to accelerate research on the different diseases. The goal of RD-HUB is to serve the global research community, the patients and the patient advocacy groups and the large community as well.
We would like to invite you to take part of this global effort and be part of this community. In case you are managing a biorepository we invite you to share your inventory of biospecimens. Uploading your biospecimens data is very easy and user-friendly. We included an Excel file function for uploading bulk biospecimens (replaces the previously available XML file bulk upload), while also retaining a manual upload option for smaller data sets. Although we will continue to include common diseases such as cancer and other diseases, the focus of the RD-HUB will be on rare diseases. All rare diseases (about 7,000) are now included. In addition to assisting researchers locate specimens, the scope of the RD-HUB includes providing links to best practices for specimen collection, handling, and processing; models and templates for informed consent, and ethical and legal guidelines for handling human subject material for research and treatment; as well as links to related articles and protocols and other useful information. (Please see the navigator on the left side of the home page.)
We hope that you will take a few moments to look at our new web site and take part in this important project. Please contact us and provide us with the name of your biorepository, your name and your contact information and we will gladly issue you a log-in credentials. To upload biospecimens data we recommend you review the User Manual for Data Entry for details on uploading biospecimens.
If you are an investigator looking for a specific specimen, the site is to help you refine your search for exactly what you are looking for your research before you contact the repository. Keep in mind that the list of specimens available associated and with the different diseases will continue to grow as we go along. In addition, this site can help you facilitate collaborations and retrieve useful information.
We will continue to strive to improve the web site and keep it up to date by adding new features as needed. Your comments and feedback are extremely important to us. Please do not hesitate to contact us and send us your suggestions and comments. We want to thank all of those who assisted us during the testing period by providing suggestions for further improving the site. We appreciate your collaboration and thank you for your patience during the past year.
Rubinstein, Yaffa (NIH/OD) [E]
Sent: Monday, June 27, 2011 3:19 PM
To: List BIOSPECIMENS
Subject: Revised Frequently Asked Questions and Answers on the Assurance Process
OHRP has posted on its website a revised set of Frequently Asked Questions and Answers (FAQs) on the Assurance Process that can be accessed at: http://answers.hhs.gov/ohrp/categories/1563. These FAQs include information on recent changes in the Federalwide Assurance (FWA) form and Terms of Assurance, which have been approved by the Office of Management and Budget (OMB). On June 21, OHRP sent out a list serve notification announcing the availability of the OMB-approved revised FWA form and Terms. That notification lists the key changes in the form and terms and can be accessed at: http://www.hhs.gov/ohrp/newsroom/announcements/2011.html#20110620.