Tuesday, October 24, 2017

AHP Alnylam Pharaceuticals Study- Electronic Diary

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

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