The information in this drug database for acute porphyria is meant to be used by health care professionals, even though it may also be of interest to patients. Drug use in acute porphyria should always be discussed jointly by patient and health care professional, and if in doubt, further advice should be obtained.
The database contains expert assessments of the potential of drugs to provoke attacks of acute porphyria. The database provides guidance based on a very careful evaluation of international clinical experience, published case reports, previously published drug lists, and theoretical considerations. The quality of patient reports used in the assessments is however often unsatisfactory and for most assessments the available clinical evidence is scarce. In addition, the theoretical models for the mechanisms of action of drugs in the porphyria disease are still incomplete.
The information in this database, which contains some degree of uncertainty, is meant as guidance to health care professionals. It must be made clear that the prescription of drugs to a patient with acute porphyria is entirely at the risk of the physician in charge.
The American Porphyria Foundation and the staff accept no responsibility for any error, difference of opinion or any adverse consequences arising from or occasioned by the use of information published on this website.
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The following individuals, who contributed their knowledge and expertise to the development of this drug list, receive our sincere thanks:
- The authors of this list: Bo Zhou and Peter V. Tishler, M. D., Channing Laboratory and Genetics Division, Brigham & Women's Hospital, Boston, MA
- Numerous patients with an acute porphyria
- Drs. Karl E. Anderson, D. Montgomery Bissell, Joseph R. Bloomer and Herbert L. Bonkovsky
- Physicians at Harvard Medical School and/or the Brigham & Women’s Hospital: Ronald A. Arky, Edward B. Bromfield, Jonathan Coblyn, Dawn L. Demeo, Sunil Eappen, Christopher H. Fanta, Samuel Z. Goldhaber, Norton J. Greenberger, Koenraad J. Mortele, Louis R. Pasquale (Massachusetts Eye & Ear Infirmary), Edgar L. Ross, Judith M. Strymish (VA Boston Healthcare System), Lewis R. Sudarsky, Chinweike Ukumadu, Bernardino Vaccaro, Stephen D. Wiviott
- Drs. Barbara W. LeDuc and David A. Williams of the Massachusetts College of Pharmacy and Health Sciences
- All individuals who contributed to existent drug lists: the Scandinavian drug database (especially Drs. Atle Brun and Stig Thunell), the University of Cape Town Porphyria Service drug database, the European Porphyria Initiative, and the Porphyria Research Unit of Professor Michael Moore of the University of Queensland
- The members of the American Porphyria Foundation for their financial and administrative support
- Ms. Nina Zonnevylle of the Brigham & Women’s Hospital (for administrative support)
- We are most appreciative of the efforts of William Southworth, M. D., who has identified mistakes, omissions and spelling errors. The database is more accurate and readable by his input.