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We want to make it easy to find and share free and high-quality disability measurement tools. Reserachers and clinicians in low-resource settings face numerous obstacles, and improving access to tools and information can eliminate one imporant barrier.
In other areas of science, there has been a shift toward sharing information and making the products of research more accessible to the public. For instance, many researchers are required to submit their scientific data (such as genetic information) to shared repositories for other scientists to use. Likewise, many funding agencies require scientific articles to be deposited in PubMed Central and made open-access.
We think there is a similar opportunity for disability measurement tools and intruments–particularly in cases where the instrument itself is little more than a questionnaire.
Good for authors, too
There’s no shortage of measurement tools and intruments, and a (depressingly large) proportion exist in obscurity. If you create a new instrument, it will be difficult to convince others to switch from the existing “gold standard” and purchase your measure. However, we find quite a few more proprietary measures than free measures, and yet, some of the most popular instruments are available for free (GMFCS, Ten Questions, M-CHAT). Receiving recognition for creating a widely-used tool could be worth more to authors than getting a cut of the royalties paid to the publishing company.
Collecting measures, not judging them
Although we use objective criteria to determine which measures belong on DisabilityMeasures.org, we do not (at present) provide recommendations about what tools should be used in a given setting. (For now, we have our hands full just trying to track down where and how measures can be obtained.)
Truly open collaboration
disabilitymeasures.org is influenced by Open Source/Free Software principles. We like to think we’re following the “bazaar” approach from Raymond’s The Cathedral and the Bazaar. In keeping with our goals to lower barriers to research and share information, we’ve made the entire disaiblitymeasures.org website open source. This makes it much easier for new collaborators to contribute and, should the need ever arise, anyone may copy the entire site at any time.