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Evaluating Your Options for Natural History of Disease Studies: Letting need drive design



Natural history of disease (NHOD) studies generate critical data that underpin treatment development and payer decisions for rare diseases. With all the options for how these studies can be conducted, how do you navigate the right scientific and operational methods to achieve your goals in the most efficient way?

Omnichannel Pharma Customer Engagement - The Time is Now

Register free: http://www.pharmexec.com/pe_w/disease​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​

Event Overview:

With the increase in rare disease treatment development, there’s an even stronger need for natural history evidence to help inform everything in the development lifecycle – from clinical trial design through payer discussions. As the appetite for natural history data grows, so do the number of sources and methods for obtaining those data.

From the front end of clinical development, to building out endpoints and finding patients for a study, there are different methods to conduct natural history of disease (NHOD) studies to drive meaningful patient results which, in turn, will fit your desired goals. The best approach for your needs requires a balance of desired evidence, audience, geography, timeline, and budgets. But how do you know what that could or should look like?

During this webinar, IQVIA experts will be joined by a partner organization, United Rheumatology, for an engaging discussion around the different methods to successfully conduct a NHOD study. This webinar will cover various strategies including literature reviews to partnering with patient organizations, direct-to-patient registries, retrospective chart reviews, and other emerging approaches to execute NHOD studies in your clinical development program.

The conversation will highlight different successful outcomes in clinical trial support as well as understanding how to use data to uncover patients with a rare disease (or those who may be candidates for a clinical study) with special focus on the use of patient advocacy groups and patient-generated data.

3 Key Take-aways:

  • Discover the diversity of NHOD studies and how to consider the study needs when deciding on the design and operational approach.
  • Uncover how disease-specific databases can provide direct real world evidence of patients’ natural history to create context for clinical development.
  • Learn about the value of patient advocacy groups and the value of patient- generated data in pursuit of NHOD information


Barbara Arone, MS
VP, Global Medical Affairs Category Lead

Jeff Keefer, MD, PhD
VP, Medical and Head of Pediatric and Rare Disease Center of Excellence

Andrew L. Concoff, MD, FACR, CAQSM
Executive Vice President, Chief Value Medical Officer
United Rheumatology

Time and Date: Tuesday, September 21, 2021 at 2pm EDT

Sponsor: IQVIA

Register free: http://www.pharmexec.com/pe_w/disease