Fabry Registry Publication & Authorship Policy

Physicians participating in the Fabry Registry may request data analyses for the purpose of publication. This policy will be administered by an International Review Committee which is comprised of physicians from the Fabry Medical community who are participating in the Fabry Registry. The Medical Directors from the U.S. and European offices of Genzyme Corporation will also be members of the International Review Committee.

NOTE: This publication policy does not apply to site-specific data. Physicians are free to publish their own data at any time.

GENERAL PUBLICATION GUIDELINES

• Any healthcare professional in the Fabry medical community may generate proposals to publish aggregate data.
• Healthcare professionals interested in publishing Registry data must submit their proposal for publication and request for data analyses on the Publication Proposal Form.
• The Fabry Registry Publication Steering Committee (PSC) and the International Board of Advisors will coordinate the publication policy and review and approve publication proposals.
• Proposals submitted by Fabry investigators actively participating in the Fabry Registry will generally be approved by the PSC unless the proposal lacks scientific merit, duplicates other previously proposed projects, raises serious legal, regulatory, or ethical questions, or poses significant limitations on resources due the scope of the work requested.
• Proposals submitted from non-participants in the Fabry Registry must be reviewed and approved by the Publication Steering Committee and the International Board of Advisors.
• Abstracts and manuscripts generated from pooled Registry data must be reviewed and approved by the PSC prior to submission to the meeting/congress or journal.
• The requesting investigator (principal author) will be required to liaise with a member of the Publications Steering Committee to review results and interpretation of the data analyses.

The Fabry Registry must be appropriately acknowledged as the source of all data used.

This policy does not apply to requests for Registry data for the purposes of clinical interest and patient care.

Download Publication Policy (PDF)

For additional information regarding this policy, please contact the Fabry Registry:

• USA/Canada/Asia-Pacific: +617-591-5500 or
  +800-745-4447, ext. 15500
• Europe: +31-35-699-1232
• Latin America: +55-21-2156-9989