Acute Hepatic Porphyria – Patient Interview Study

There are many different ways you can help with research, not just participating in a drug research trial.  Below is one of the very different but equally important ways to make a difference:

Alnylam Pharmaceuticals is currently conducting a study with individuals who have Acute Hepatic Porphyria (AHP); AIP, VP, HCP, or ADP, as well as with caregivers of someone with AHP.  The purpose of this study is to understand opinions about a newly developed porphyria Electronic Diary.

You or your caregiver can be a great assistance in this new study.  It is important to know if this particular Electronic Diary is easy to use and efficient. The study is conducted by a vendor different from Alnylam.  Please contact the APF if you would like to participate.  Remember, your caretaker can participate, too.  There are only 8 spots left, so join now.

Potential participants will be screened by phone and if they qualify, an interview will be scheduled. The interview will be conducted in-person, will be approximately 60 minutes long, and will be audio-recorded. Participants will be compensated for their time. Alnylam will not know the names of any participants, and the feedback received will be anonymous.

Email Edrin at the APF:  edrinw@porphyriafoundation.org

Or call 713.266.9617 or 866.APF.3637

 

"Remember..... Research is the Key to Your Cure!"