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Office of Rare Diseases Research launches web site for Rare Diseases Human Biorepostiories and Biospecimens (RD-HUB)

Yaffa Rubinstein, Ph.D
Director of Patient Resources for Clinical and Translational Research

Steven Groft, Pharm.D
Director of the Office of Rare Diseases (ORD) at the National Institutes of Health (NIH)

The Office of Rare Diseases Research (ORDR) recently announced its new web site for Biospecimens/Biorepositories called Rare Diseases-HUB (RD-HUB) biospecimens.ordr.info.nih.gov. The completion of the first phase of this site was made possible with a donation from the Foundation for Jewish Charity (FJC.org) to the Foundation of the National Institutes of Health.

The purpose of this web site is to provide a portal for researchers to locate and inquire about the availability of specimens from biorepositories around the world. Researchers can use RD-HUB to check specimen availability from repositories that share their inventory, with the specific requirements they are looking for, before contacting the repository directly. RD-HUB will facilitate global collaboration and interaction among researchersin the hopes of accelerating research.

RD-HUB invites the rare diseases community to take part in this global effort. Organizations managing a biorepository are invited to share their inventory of biospecimens. The site includes an Excel file function for uploading bulk biospecimens (replaces the previously available XML file bulk upload), with a manual upload option for smaller datasets. The focus of RD-HUB will be on rare diseases. RD HUB will also promote best practices for specimen collection, handling, and processing. It will provide models and templates for informed consent, and ethical and legal guidelines for handling human subject material for research and treatment. It will also provide links to relevant articles, and sample protocols and other useful information.

The list of specimens available associated with the different diseases will continue to grow as more biorepositories participate.

This site will be linked to the Global Rare Diseases (patient) Registry and Data Repository (GRDR) project with the anticipated goal of enabling the linking of patient clinical information with their donated biospecimens using voluntary unique patient identifiers.

For additional information, contact:

Yaffa Rubinstein, Ph.D.
rubinsty@od.nih.gov

Steven Groft, Pharm.D
GroftS2@OD.NIH.GOV.

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The Rare Diseases Clinical Research Network (RDCRN) was established by the National Institutes of Health (NIH) to develop research studies for rare diseases, and to encourage cooperative partnerships among researchers at over 150 clinical centers around the world. This increased cooperation may lead to discoveries that will help treat and perhaps prevent these rare diseases, as well as produce medical advances that will benefit the population in general. The Rare Diseases Clinical Research Network is comprised of a Data Management Coordinating Center and 19 consortia studying over 100 rare diseases.	Funding and/or programmatic support for the Rare Diseases Clinical Research Network (RDCRN) has been provided by NIH Office of Rare Diseases Research (ORDR), NINDS, NIAID, NIDDK, NICHD, NIAMS, NIAID, NIDCR, NHLBI, and NCI.
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