Enroll-HD – Politica di pubblicazione
Enroll-HD e la Fondazione CHDI rispettano la libertà dei ricercatori di perseguire i propri interessi di ricerca, inclusa la pubblicazione indipendente e illimitata delle proprie analisi e risultati.
I ricercatori che utilizzano dati o campioni biologici generati nell’ambito dello studio Enroll-HD si impegnano a:
- prompt publication of all valid data, outcomes, and other results derived using data or biosamples;
- riconoscimento del ruolo svolto da tutti i soggetti che contribuiscono ad una pubblicazione, in qualità di autori o meno;
- 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 that will substantially improve the lives of those affected by 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
- riconoscimento dei soggetti che hanno contribuito alla raccolta dei dati Enroll-HD inserendo l'URL (https://enroll-hd.org/enrollhd_documents/Enroll-HD_Acknowledgement-List_20250821.pdf) che elenca tali individui.
Ricercatori che accedono ai dati o ai campioni biologici attraverso la piattaforma Enroll-HD che sono stati generati all'interno altri studi clinici sulla MH are similarly committed to this publication policy, including acknowledgment of the role played by all individuals contributing to a publication, as authors or otherwise, using language determined for each dataset in the specific data use agreement.
Paternità. 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 criteri di paternità definiti dal Comitato internazionale degli editori di riviste mediche (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.
Comitato per la pubblicazione. If one or more individuals propose to base a scientific publication on the analysis of data or biosamples obtained through Enroll-HD/CHDI and the data or biosamples were not generated solely by such individual(s), 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).
Accesso libero. 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 (gold) open-access journals; publications in such journals may qualify for publication cost reimbursement from CHDI (see politica di rimborso delle spese di pubblicazione).
Archiviazione. Researchers using study data and/or biosamples obtained through Enroll-HD are encouraged to send a copy of each published manuscript to info@enroll-hd.org upon publication; a link to the article. If permitted by the journal, a version of the article (or link to it) will be made available on the Enroll-HD website.
Updated August 21, 2025
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