Publication Policy

The Pompe Registry welcomes research and publication proposals according to the following guidelines:

• Any healthcare professional may generate proposals to publish aggregate data.
• The publication policy does not apply to site-specific data and as such physicians are free to publish their own data at any time.
• Healthcare professionals interested in publishing Registry data must submit their proposal for publication and request for data analyses via the Registry Advisory Committee.
• The Pompe Registry Advisory Committee will coordinate the publication policy, review and approve publication proposals, and review publications/abstracts.
• If a significant (greater than or equal to 20%) portion of the data set (represented by total patients or data from a specific disciplinary area) used for a particular analysis comes from a single contributing physician, that contributing physician should consent to the publication and/or be invited to co-author. The principal author will discuss the project and authorship directly with the contributing physician. The contributing physician will have the option to withdraw his or her data from this publication.
• In order to author a publication based on registry data, the principal author must be a significant (greater than or equal to 20%) contributor of the registry data (patients or observations from a specific disciplinary area) used for the publication.
• The Pompe Registry must be appropriately acknowledged as the source of the data. In addition, proper acknowledgement must also be given to those physicians (non-authors) who contributed to the data analyzed.