Sleep questionnaire copyright fees can benefit research: a response to Chiang and Folz

Le résumé fourni par la source

Dear Editor, Drs. Chiang and Folz [1] raise important issues about the difficulty obtaining permission for the use of copyrighted sleep questionnaires and the lack of transparency of their cost structures. However, while we believe they have identified some important problems with the system, we also believe that it is fair to charge for-profit entities reasonable fees for use of these instruments and that there can be significant benefits if the revenue from these fees is redirected into research. We use the International Restless Legs Syndrome Study Group (IRLSSG) as an example. As the authors point out, it is important to have validated questionnaires to compare the efficacy of clinical treatments as well as screening and assessment tools. The authors recognize that there are costs associated with validation of these instruments that are often not covered by grants or other funding sources. They acknowledge that these valuable questionnaires are generally used at no cost by academic researchers or individual clinical practices but they are concerned by the cost imposed on the for-profit sector. Through describing the difficult and frustrating process they went through to obtain permission for instrument use, they make an excellent point: the copyright permission costs should be readily ascertainable and the process for obtaining permission relatively straightforward. They further argue that grant funding should be available for the development of these questionnaires. We disagree, however, with their assertion that copyright holders should exempt or reduce the cost for investigator-initiated trials sponsored by small for-profit companies as the cost might “impede research advancement.” We sympathize with the concern that a small start-up has limited resources. However, engaging in business has costs, and paying for intellectual property is one of the costs investors should be willing to bear. For-profit enterprises take on financial risks for the prospect of significant rewards; copyright costs are one aspect of their overall cost of doing business. As with for-profits, nonprofits have expenses, plans, and a very specific mission. Asking nonprofits to forgo their royalties from scales would reduce their ability to carry out their work. The IRLSSG (http://irlssg.org/) is a nonprofit 501c3 organization with a mission to “advance knowledge about the cause(s), pathogenesis, clinical impact, and management of RLS and related disorders.” In 2003, members of the organization developed, validated, and published an RLS severity rating scale, the IRLS [2], for use in clinical trials and epidemiological research, a process that required investment of substantial time and effort on the part of many volunteer clinician-researchers. The instrument is provided to investigators through the Mapi Research Trust (as is the Insomnia Severity Index) as described on the IRLSSG website. The cost structure for use of this questionnaire is easily obtained by registering on the Mapi website (https://eprovide.mapi-trust.org/instruments/international-restless-legs-syndrome-study-group-rating-scale#member_access_content). The copyright revenue has been used by the IRLSSG to fund more than 15 projects, such as adult and pediatric RLS clinical diagnostic criteria [3–5], research diagnostic criteria [6], as well as treatment [7, 8], periodic leg movement and movement scoring [9, 10], and animal model [11] guidelines which further scientific investigation into both clinical and research aspects of RLS. In addition, the IRLSSG hosted 2-day RLS meetings in 2008 and in 2016 (the latter proceedings published as a special issue in Sleep Medicine [12]), holds annual meetings at APSS or WSS, and provides yearly funding for multiple Wayne Hening Young Investigator awards. We wholeheartedly agree with Drs. Chiang and Folz that research needs to be encouraged and supported with as few obstacles as possible. To that end, we agree that permission for use and fee structure for copyrighted material should be easily accessible and transparent with copyright holders using services such as Mapi Research Trust or registering on Creative Commons (https://creativecommons.org), as suggested by Hays et al. [13], to elucidate requirements of instrument use. We encourage other copyright holders to use their revenue to further research in their fields. Finally, we do, however, believe that for-profit entities, regardless of size, should not object to paying reasonable licensing fees as one of their many costs of doing business. None declared. None declared.

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