Widening participation for orphan drug trials

Posted by pfc202

Orphan drugs are medicines for diagnosis, prevention or treatment of life-threatening or progressive disorders that are rare (affecting less than 1 in 2,000 people). An example is Idiopathic Pulmonary Fibrosis (IPF).

We are approaching a number of people who have Idiopathic Pulmonary Fibrosis (IPF) to learn more about how and why they have or have not been referred to trials of new drugs for IPF and their experiences of participating in any trials of new drugs.

Dr Julia Frost of the University of Exeter, an experienced healthcare researcher, would like to interview people with IPF (by phone or internet) about their experiences of having IPF; referral to and participation in clinical trials of drugs for rare diseases, or non-participation. This study is funded by UK Research and Innovation (Medical Research Council) (MR/W003732/1).

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