Genome-Wide Association Study of Post-Accutane Syndrome


Staff member
Jun 27, 2018
Genome-Wide Association Study and post-Accutane Symptom Profile:

The administrators of and are collaborating on a community-driven genome-wide association study (GWAS) of sufferers of persistent post-drug side-effects from Accutane, Propecia and SSRIs. This is based on 23andMe SNP genotyping data.

This will tell us:
  • What genes are involved in developing certain side-effects from one of these classes of drugs
  • What genes are involved in susceptibility to the symptoms being persistent/permanent
  • What biological systems to inspect more closely to answer why this is happening to us
  • What pathways may be targeted to overcome these side-effects
If there is a strong association between some of the ~750,000 genotypes tested for by 23andMe, and all, or one, of our patient groups or side-effect categories, we will have some answers finally and we will use this to encourage further research.

If you have 23andMe data, please sign up to, fill-out the questionnaire (if only briefly) by posting to the “Member Stories” forum category, and upload your 23andMe raw data (should be .zip, .txt, or .raw file extension) to the digital dropbox account (use anonymous name and email for dropbox submission with forum username and substance-taken as the filename for your 23andMe file).
More detailed instructions can be found here.

You are under no obligation to post on the site beyond registering to provide a username and answers to the member story questionnaire and checklist.

This is a very low-cost option to contribute in a big way. 23andMe kits are available for as little as $99. The more people we have describing their symptom profile and submitting 23andMe results, the more power this will have.

In addition to the GWAS, the member-profile symptom checklist will be augmented by a more comprehensive patient survey system soon to be implemented on the site. The current Post-Accutane Syndrome (PAS) symptom profile is very-poorly defined, with each side-effect discussed as a discrete and isolated entity, both in medical literature, an in online forum discussions.

Providing a member profile with complete symptom checklist will help:
  • Establish a definition of “Post-Accutane Syndrome” by determining the prevalence and characteristics of physical, neurological, gastrointestinal, and sexual and reproductive symptoms
  • Identify the contributions of dosage, duration of use, and tapering effect toward time of onset and severity of side effects
  • Determine the overlap among Post-Accutane Syndrome and several other persistent post-drug medical conditions
  • Find the most commonly successful treatments for ameliorating certain symptoms
This is an even more low-cost alternative to participating in the GWAS initiative, requiring only a small investment of time.