BRIEF—ABPI welcomes Rare Disease Research Landscape report

The first  Rare Disease Research Landscape report  has been published by the UK’s National Institute of Health Research (NIHR) in collaboration with the Medical Research Council (MRC), industry, charities and the devolved administrations.

This gives an overview of the research into rare diseases being sponsored by the government, charities and industry in the UK.

Responding to the news, Association of the British Pharmaceutical Industry Association (ABPI) director of innovation and research policy, Janet Valentine, said: “This report is the first of its kind that maps out the UK rare diseases research landscape across government, charity and industry. It provides a helpful overview of the research activities underway in conditions that affect 1 in 17 people in the UK.

“Research is a global endeavor and industry has more than 700 medicines in development internationally for rare diseases. We want to make sure that UK patients can benefit from these advances. This report demonstrates the vibrant ecosystem for rare disease research that we have in the UK and underlines the importance of attracting industry to carry out clinical trials here.”

The pharma industry has data identified 530 projects, of which 267 were in rare cancers, nine in rare infectious diseases and 254 in other rare diseases. However, rare cancers and infectious diseases were excluded from the analysis for all sectors, so only 254 are mentioned in the press notice, the ABPI pointed out.