October 31, 2013
Founded in 1995, ISPOR is a non-profit public organization for educational and scientific purposes, as defined by the US IRS, and a non-profit research organization under the European Commission 7th Framework Programme. It promotes worldwide the science of pharmacoeconomics and outcomes research and facilitates the translation of this research into useful information for healthcare decision makers to increase the efficiency, effectiveness, and fairness of health care to improve health.
As more Rare Disease diagnostics and treatments are developed, ISPOR decided to examine the rare disease area. ISPOR’s Rare Disease Special Interest Group will elucidate issues pertinent to health technology assessment (HTA) in the Rare Disease environment so that researchers, payers, patients and life sciences companies can effectively address key challenges and more effectively establish the value of new and existing diagnostics and therapeutics. There are four working groups representing the four goals of the RD SIG:
- Rare Disease Terminology & Definitions Used in Outcomes Research Working Group
- Challenges in Assessing and Appraising Rare Disease Treatments Working Group
- HTA of Rare Disease Diagnostics and Treatments Working Group
- Methodology – Measuring Use, Costs and Effectiveness of Rare Disease Care Working Group