Quintiles-Rare Disease Research

Rare Disease Research with the Patient at Heart

In Clinical Development, Whitepapers by Freya Smale

Rare Disease Research must both be real-world and patient-centric. Check out these helpful resources on how to get the most out of your Rare Disease Research provided by Quintiles.

Podcast: “Patient Registries for Real-World Research”
Kathryn Starzyk explains the role and potential benefits of utilizing patient registries in conducting rare disease research

Listen to the podcast here >

Google Hangout: “Rare Disease Day 2015: Connecting Insights for Better Patient Outcomes – Rare Disease Research with the Patient at Heart”
In honor of #RareDiseaseDay 2015, Quintiles hosted a live Google Hangout on Thursday, Feb. 26th with a panel of guest healthcare experts: Connecting Insights for Better Patient Outcomes. If you were unable to attend the live event we encourage you to watch this full video recap, featuring host Bill Looney, editor-in-chief of Pharmaceutical Executive, as well as panelists from NORD, Alexion, Quintiles R&D and the patient community.

Globally, the list of rare diseases has grown to nearly 7,000. If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. Characteristics of rare diseases include high complexity, low prevalence and predominance in children, which can pose significant barriers to treatment and drug development. Let’s continue the discussion to progress drug development for these diseases and improve patient outcomes.

Watch the hangout here >

Quintiles is joining us at this year’s World Orphan Drug Congress USA 2015 – join them by visiting the website >