The Situation

XLHED is a rare, X-linked genetic condition with a small, treatable patient population. Edimer Pharmaceuticals has developed ED1200, a treatment for newborns with XLHED. However, in order to achieve optimal patient results, ED1200 must be administered within the first 14 days of life.

Recruiting for the Neonate Phase II trial was challenging. The goal was to identify and capture 200 XLHED-affected women of childbearing age in the Edimer database. To further increase the challenge, the women who were XLHED carriers needed to be pregnant with a boy, and willing to administer ED1200 within 2 weeks of birth.

The XLHED website was part of a multi-pronged recruitment campaign using social media, search marketing, live events, viral marketing, and print.

The Result

There were 450 new enrollees into the XLHED Network database within 6 months. 93 women with XLHED of childbearing age were identified and signed-up for Phase II of the ED1200 clinical trial.