Congress' 21st Century Cures Initiative: PAN Submits Letter

PAN submitted a letter on the 21st Century Cures patients whitepaper calling for better incentives for the drug industry to invest and move targets through the pipeline for Parkinson’s disease and other neurological disorders.

The letter states, “Ultimately, we want to ensure that we level the playing field for [central nervous system] (CNS) science and ensure that bright ideas are not abandoned because of business prospects but are invested in and brought through the development process to achieve the greatest potential the science has to offer. We must look at alternative ways to further scientific discovery, decrease development time and costs as well as increase success rates for CNS diseases.”

The letter also outlines current therapies for Parkinson’s disease, the financial burden of the disease, and the state of federal research funding. PAN also makes recommendations in the following areas:

  • Analyze need for additional incentives
  • Federal funding for research
  • Research reproducibility and data access
  • Pursue designation of a centralized institutional review board (IRB) for multi-site trials
  • Use of adaptive clinical trials
  • Encourage use of alternative outcome measures
  • Become more actively involved in ongoing biomarker initiatives.
  • Encourage enhanced communication to build awareness about clinical trials
  • Develop guidance on risk-benefit engagement

To read the full letter, click here. PAN will continue to engage with the House Energy and Commerce Committee as the 21st Century Cures initiative continues.


Date originally posted: June 20, 2014.