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Crowd-sourcing and Aggregating Information

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Guide Content | Chapter 2: Improving Quality and Accessibility

Program Spotlight: Disease InfoSearch    

Genetic Alliance


For the last 20 years, Genetic Alliance has collected information on support and disease advocacy organizations (DAO). At first a spiral bound book, this resource became a searchable online database in 1998, and formally launched as in March 2013. Its most recent iteration uses crowd-sourced information from DAO combined with aggregated information from public and private databases to provide details on almost 10,000 conditions and their related support and advocacy networks. DIS serves as a credible resource for families and healthcare providers hoping to learn more about diseases, the latest research, clinical trials, and available support resources. Through collaboration with the entities that produce nomenclature for genetic diseases, DIS pulls information from OMIM, PubMed, Genetics Home Reference, Gene Reviews, Genetic Testing Registry, and

For DIS to be successful, a wide variety of DAOs and healthcare provider groups must be engaged. We conduct continuous outreach and review of organizations to be included. By January 2014, DIS had grown to include over 650 organizations and garnered almost 15,000 views per month.

Disease InfoSearch was developed with grant funding from the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch and the Leona M. and Harry B. Helmsley Charitable Trust.

Sharing Lessons Learned

What are the benefits of crowd-sourcing?

There are over 10,000 genetic conditions and no one person is an expert on all of them. From our experience working with disease advocacy organizations, it was clear that no organization could successfully curate information on all of those diseases and then keep them up-to-date. Therefore, for Disease InfoSearch, it was a requirement that we crowd source. Because we knew that disease advocacy groups have the best incentive to keep information current, we felt these experts were the appropriate audience to engage.

Why create a search tool when many large search engines (such as Google) exist?

When it comes to health information, Google can be an individual’s best friend or worst enemy. Google’s algorithms don’t necessarily rank by the quality of the information presented and the results are largely dependent on the seeker typing in the correct search terms. In addition, many of the resources available in large public databases (such as articles) cannot be easily found through a search engine. By aggregating multiple sources of information and presenting them in a clear user interface, we hope to provide a much greater depth of information, but in an accessible way. In addition, because we require certain fields to be completed by DAO, we can help users compare the support resources available to them.

What are the biggest challenges in aggregating information from other content providers?

Though aggregating content has some major advantages, including the ability to dramatically increase the amount of information offered, it also has some drawbacks. Without standards in place, it can be difficult for multiple databases to talk to one another. Some websites bypass this requirement by using a type of software called a web crawler, which can index and collect content from across the web. But, even so, changes to the source of the data can dramatically impact your website. In addition, you have little control over the content produced. Because of this, it is much safer to pull from stable data sources, such as those provided by the federal government, large companies, or trusted partners.

Do you have another question about this program? Click here to ask a question.

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