Confidentiality Issues and Submission Guidelines

Patient Confidentiality

As we proceed with this venture, we must be very cognizant of the issue of patient confidentiality. Of course, no patient identifiers would ever be revealed, but if the cases are rare enough, the question of being able to identify such patients just from the case description and institution of origin arises. "Hypothetical" cases on the PICU list are most often posted in a consultative realm, and could therefore be viewed as attempts to directly benefit a particular patient. In addition, the PICU list is not public. The web registry, however, would be of primarily educational value, and might be viewed by a much wider audience.

Therefore, we believe that families should be approached for consent to post a report about their child in this forum. A verbal discussion should be undertaken to inform parents that medical details about their child will be reported primarily for educational purposes on the Internet's World Wide Web (with explanation of this medium as indicated), and that no identifying information will be revealed.

If you have additional thoughts on the issue of patient confidentiality, please contact the section editor, Katherine Biagas, or use our feedback form that asks for opinions regarding possible password-protection of the Registry.

• Also see a discussion about informed consent and publication in JAMA:
  • Patient Consent for Publication and the Health of the Public. Snider DE. JAMA 1997;278:624-626. (citation)
  • Obtain Informed Consent Before Publishing Information About Patients. Clever LH. JAMA 1997;278:628-629. (citation)
  • And the accompanying editorial: Informed Consent for Publication. Fontanarosa PB, Glass RM. JAMA 1997;278:682-683. [citation]

Guidelines for Submission

• Case reports should be succinct but without jargon or unnecessary abbreviations.
• List the names of authors with institutional affiliations.
  • Please include an email address, telephone, and fax number where the primary author can be reached.
  • Only the primary author's email address will be included in the "published" report (not telephone or fax numbers)
• Use SI units or "dual reporting" as outlined in JAMA 274: 91-8, 1995 (July 5).
• Submissions may be by email or floppy disk in ASCII format (contact us if illustrations or graphics are involved).
• Please include a statement at the end of the report documenting verbal consent for submission from the patient and/or parents or guardians as appropriate.
• Ideally, reports would include a discussion section to summarize the case and provide an educational discussion with appropriate inclusion of relevant citations. PedsCCM now offers a "match" service, where the clinical case is presented by the originating author and institution, and we will identify an interested discussant to provide the commentary and literature review. We hope this should serve to stimulate more interest in submitting cases!
• Copyright notice: authors retain all copyright to original material, including case reports, published on PedsCCM. See the Editorial and Copyright notes for details.

Please contact Katherine Biagas, section editor

Email address: katherine.biagas@yale.edu

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