CHDI adopts policies that further our mission to develop therapeutics for Huntington’s disease as quickly as possible and ensure that our support is provided in a transparent and consistent basis. These policies are summarized below.
If you have any questions about any of our policies, please email us at Info@CHDIFoundation.org
Data, Reagents, and Biomaterials Sharing Policy
CHDI Foundation believes its mission is best served by expanding the precompetitive space in Huntington’s disease drug development; this entails the sharing of ideas, data, information, expertise, reagents and biomaterials to the widest extent possible, and ensuring such exchanges are simple and straightforward. Put simply, to expedite drug development CHDI favors making any insights into Huntington’s disease biology freely available.
Our approach, embodied in our agreement terms, reflects our attempt to strike a balance between the free exchange of information, researchers’ publication interests, and the creation of appropriate intellectual property. For reagents, models, and other tools developed using CHDI funding, typically the foundation chooses not to assert intellectual property claims. Instead, CHDI requires a license in perpetuity that allows any party to use any such materials or technology for HD research purposes. CHDI’s policy is that exclusive intellectual property rights should only be asserted when appropriate to incentivize the further development of candidate therapeutics.
CHDI Foundation recognizes that scientific publication is central to the scientific endeavor and respects the freedom of scientific investigators to pursue their research interests, including independent unrestricted publication of their findings.
- Researchers supported (financially or with data or biomaterials) by CHDI are expected to:
- promptly publish or otherwise disseminate all valid data, conclusions, outcomes, and other results derived using financial support, data or biological materials provided by CHDI;
- acknowledge the role played by all individuals contributing to a publication, as authors or otherwise; and
- recognize the financial support and the generation of any data and/or biological materials provided by CHDI with the phrase “This work was funded by CHDI Foundation, Inc., a nonprofit biomedical research organization exclusively dedicated to developing therapeutics that will substantially improve the lives of HD-affected individuals”. Any other entity providing funding for the scientific work or the generation of data or biological materials upon which the publication is based should also be acknowledged as appropriate.
- Authorship – eligibility for authorship, the order of authors, the acknowledgment of persons whose contribution does not warrant authorship but does merit recognition and, to the extent addressed therein, other matters related to authorship should be determined in accordance with the Guidelines for Responsible Conduct Regarding Scientific Communication set forth by the Society for Neuroscience (SfN) from time to time. In particular, the authorship criteria defined by the International Committee of Medical Journal Editors should be applied, as already adopted by the SfN, The British Medical Journal, The Journal of the American Medical Association, The Lancet, The New England Journal of Medicine, and the Public Library of Science, among many others.
- Publication Committee – If one or more individuals propose to base a scientific publication on the analysis of data or biological materials funded by or obtained from CHDI, it is recommended that a publication committee be formed to address publication issues (including authorship) relating to the publication. A publication committee should consist of all persons who qualify as an author or who would do so were they offered a role in manuscript preparation (see ICMJE criteria above).
- Open Access. Scientific publications resulting from the financial support, data or biological materials provided by CHDI should be disseminated as widely as possible. Authors are encouraged to submit publications to fully open-access journals; publications in such journals may qualify for publication cost reimbursement from CHDI (see Policy for Reimbursement of Publication Costs).
Policy for Reimbursement of Publication Costs
CHDI is committed to ensuring the wide dissemination of the data and findings resulting from the research that it funds. To that end, CHDI helped establish PLOS Currents: Huntington Disease as a free, archived, indexed, citable, open-access publishing platform for the HD research community. So as to not discriminate against researchers who want to publish their CHDI-funded data and findings in non-HD journals, CHDI will give full consideration on a case-by-case basis to covering publication costs in fully open-access journals; if publication is sought in a paid-subscription journal, CHDI will consider covering the incremental open-access fee that is additional to the paid-subscription access costs. Reimbursement of publication costs will be handled outside of any Research Agreement and should not be included in budget proposals. All open-access reimbursement requests should be forwarded prior to submission to the Director, Scientific Communications at firstname.lastname@example.org. Discussion is encouraged at an early stage to ensure that eligible publication costs will be considered for reimbursement.
Financial Support for Conferences, Meetings, or Workshops
CHDI prefers to support research rather than meetings at which research results are reported. When we consider a topic requires discussion to further Huntington’s disease research, we may organize a workshop or meeting.
CHDI will consider supporting an independent meeting if:
- The meeting proposal demonstrates how HD researchers will benefit from the experiences and activities of those working in different fields
- CHDI has input into the format and the planning of the meeting
- A written request for support is submitted three months before the meeting
Preclinical Research – CHDI research agreements with academic institutions provide an allowance for overhead and indirect costs equal to 15% of budgeted personnel and laboratory consumables costs incurred in connection with laboratory research projects. Costs associated with custom-made reagents, animals purchased from third parties, equipment, travel, and per diem expenses are not considered personnel or laboratory consumables costs for purposes of this overhead and indirect costs allowance.
Clinical Research – Overhead and indirect costs associated with the coordination, data management, biostatistics, and site activities of clinical research projects are currently assessed on a case-by-case basis.
CHDI research agreements with academic institutions are intended to support the work of faculty members, post-doctoral fellows and associated technical staff. In exceptional circumstances CHDI will consider providing support for graduate students. However, these circumstances must be discussed before a project commences and will be assessed on a case-by-case basis.