ASENT Advocacy Forum

Each year, the ASENT Advocacy Forum presents an opportunity for in depth discussion of hot topics in neurotherapeutics development as identified by patient advocates.    It is developed by the Advocacy Committee of ASENT, which seeks to facilitate advocate and advocacy organization participation in the Society and at Annual Meetings. ASENT and the advocacy groups share a common goal: to reduce barriers to therapeutics development and to smooth the path in bringing new treatments to patients.  The leadership of ASENT is dedicated to building continuing relationships and encouraging communication with the advocacy community and has committed to supporting the ASENT Advocacy Forum as a free program that is open to the public.  All stakeholders in the neurotherapeutics development are invited to attend. If you would like to register, please click here

Join Us for ASENT's Seventh Annual Advocacy Forum

Thursday, March 6, 2008 at the Crystal Gateway Marriott Hotel, Arlington, Virginia from 9:00am-Noon

Topic: Patient-Reported Outcome Data:  Will This Improve Therapeutic Development?

Chair: Cynthia Joyce, SMA Foundation

Topics will include:

• Regulatory Perspective: Toni Stifano, FDA; Center for Drug Evaluation and Research
• Industry Perspective: Chris Leibman, Elan Pharmaceuticals, Inc.
• Clinical Perspective: Robert Griggs, M.D., University of Rochester
• Panel Discussion: Chair-Jesse Cedarbaum, M.D. Elan Pharmaceuticals, Inc.

          Ron Bartek, Friedreich's Ataxia Research Alliance)

          Robert Griggs, M.D., University of Rochester

          Walter Koroschetz, M.D., NINDS

          Chris Leibman, Elan Pharmaceuticals, Inc.

          Toni Stifano, FDA; Center for Drug Evaluation and Research

Information for Advocacy Groups

• This guidance describes how the FDA evaluates patient-reported outcome (PRO) instruments.  Go to
  www.fda.gov/CDER/GUIDANCE/5460dft.pdf

• User’s Guide to Registries Evaluating Patient Outcomes: Summary

ASENT Advocacy Committee

Cynthia Joyce (Chair)

SMA Foundation

Judith Blazer

WE MOVE

Perry Cohen Ph.D.

Parkinson Pipeline Project

Robin Elliott

Parkinson's Disease Foundation

Jean Hubble

Vernalis

Rosalie Lewis

Dystonia Medical Research Foundation

Jill Rasmussen M.D.

Psynapse

Cynthia Rothblum-Oviatt Ph.D.

A-T Children's Project