Enroll-HD – Publication Policy
Enroll-HD and CHDI Foundation respect the freedom of investigators to pursue their research interests, including independent unrestricted publication of their analyses and findings.
Researchers using data or biosamples generated within Enroll-HD study are committed to:
- prompt publication of all valid data, outcomes, and other results derived using data or biosamples;’
- acknowledgment of the role played by all individuals contributing to a publication, as authors or otherwise;
- acknowledgment (in the Methods section when appropriate) of the Enroll-HD data-gathering methods with the following language – “Data used in this work were generously provided by the participants in the Enroll-HD study and made available by CHDI Foundation, Inc. Enroll-HD is a global clinical research platform designed to facilitate clinical research in Huntington’s disease. Core datasets are collected annually from all research participants as part of this multi-center longitudinal observational study. Data are monitored for quality and accuracy using a risk-based monitoring approach. All sites are required to obtain and maintain local ethical approval”;
- acknowledgment of the Enroll-HD research participants as a group and the support of CHDI Foundation as the sponsor with the following language – “Biosamples and data used in this work were generously provided by the participants in the Enroll-HD study and made available by CHDI Foundation, Inc. Enroll-HD is a clinical research platform and longitudinal observational study for Huntington’s disease families intended to accelerate progress towards therapeutics; it is sponsored by CHDI Foundation, a nonprofit biomedical research organization exclusively dedicated to collaboratively developing therapeutics for HD. Enroll-HD would not be possible without the vital contribution of the research participants and their families”. Other entities providing support (financial or otherwise) should also be acknowledged as appropriate; and
- acknowledgment of the individuals who contributed to the collection of the Enroll-HD data by including the URL (https://enroll-hd.org/enrollhd_documents/ENROLL-HD_AcknowledgementsListPDS6_v1.0_20230119.pdf) that lists those individuals.
Researchers accessing data or biosamples through the Enroll-HD platform that were generated within other clinical HD studies are similarly committed to prompt publication of all valid data, outcomes, and other results derived using those data or biosamples; this includes acknowledgment of the role played by all individuals contributing to a publication, as authors or otherwise, using language specified for each dataset in the data use agreement.
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 by the publication committee (see below) 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, Enroll-HD will adhere to the authorship criteria defined by the International Committee of Medical Journal Editors (ICMJE) that are 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 biosamples obtained through Enroll-HD and the data or biosamples were not generated solely by such individual(s), a publication committee will be formed to address publication issues (including authorship) relating to the publication. A publication committee should consist of (1) all authors who were involved in the design of the scientific work using such data or biosamples, or the analysis of the data resulting from such scientific work (or those who would qualify as an author were they offered a role in manuscript preparation; see ICMJE criteria above), and (2) persons who collected a substantial part of the data or biosamples used in the scientific work.
Open Access. Scientific publications resulting from data and/or biosamples provided through the Enroll-HD platform 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).
Archiving. Researchers using study data and/or biosamples obtained through Enroll-HD are encouraged to send a copy of each published manuscript info@enroll-hd.org upon publication. If permitted by the journal, a version of the article (or link to it) will be made available on the Enroll-HD website.
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