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Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary (2008)
Board on Health Sciences Policy (HSP)

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Wizemann, Theresa, Robinson, Sally, Giffin, Robert. "5 Strategies for Facilitating Sharing of Research Materials and Data." Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary. Washington, DC: The National Academies Press, 2008.

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Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies - Workshop Summary

Finding Materials and Data

Determining where to look and whom to contact for research materials or data may seem simple, but this often is not the case. Certainly it is easiest to find something when all resources of potential interest are located in the same place. One approach to collecting resources is through the development of repositories, whether for reagents and materials or for data.

Repositories have a number of characteristics that facilitate the exchange of materials and data. In general, they are set up to be searchable. Once created, a repository can alleviate the technical, logistical, and administrative burdens associated with sharing, such as propagating vectors, aliquoting materials, managing paperwork for shipping, and completing the material transfer agreement (MTA). Most repositories require users to register to make a withdrawal, and this registration usually serves as the standardized agreement under which withdrawals are made. Users understand the terms associated with transfers to them or to the repository and the use of those materials before they make a request or a donation. Another benefit of repositories is that the distribution and use of materials can easily be tracked, and their impact on research can be assessed. The National Institutes of Health (NIH) has supported a number of successful repositories, such as the NIH AIDS Research and Reference Reagent Program, the Malaria Research and Reference Reagent Resource Center (MR4), and the Biodefense and Emerging Infections Research Resources Repository (BEI Resources) (see Table 5-1).

Another model for sharing is a virtual repository, consisting of an electronic material-transfer system functioning in some ways similarly to eBay or the marketplace on Amazon.com. The repository contains information about available materials and facilitates the transactions necessary to acquire those materials, but the materials themselves are not maintained

TABLE 5-1 Examples of Repositories of Materials and Data Supported by the National Institutes of Health

 

AIDS Reagent Program*

MR4

BEI Resources

Year of inception

1988

1998

2003

Unique materials contributed

>8,500

>1,200

>10,000

Requests in 2007

>15,000

1,600

6,700

Countries of requesters

65

66

30

Registrants

>3,800

650

677

NOTES: Data are for 2008. BEI Resources = Biodefense and Emerging Infections Research Resources Repository; MR4 = Malaria Research and Reference Reagent Resource Center.

*The AIDS Reagent Program is described further in Cohen, 2008.

SOURCE: Mowatt, 2008.

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