06 Aug 2002

Recommendations:

1. Facilitate access to blood samples from people in prospective studies so that experimental biomarkers can be tested in stages prior to disease. Help develop standards for sample collection that preserve RNA and protein for further analysis.

2. Facilitate creation of lymphocyte cell lines, perhaps beginning with Down's syndrome cohort.

3. Fund feasibility of MRI-guided ultrasound delivery of imaging ligands and therapeutic compounds.

4. Set up working group to import additional information management tools into Alzforum website, to support mechanisms for sharing information on preliminary data, negative results, equipment, etc.

5. Help implement mechanisms to improve sharing of mouse strains, antibodies, cell lines, genetic constructs, and other research materials. Support housing/breeding of mouse strains, antibody preparation.

6. Investigate funding companies to produce and distribute sought-after antibodies faster and more efficiently than is possible in academic labs. Oblige everyone receiving foundation support to sign pledge to share information and reagents.

7. Facilitate forging of consensus among drug makers and clinicians on what efficacy endpoints/surrogate markers to measure and how, before taking any compound into clinic. For MRI/PET/SPECT: facilitate consensus on markers other than cognitive change. Begin now to develop consistent strategy vis-a-vis the FDA.

8. Facilitate establishment of accessible databases about Down's syndrome populations at brain centers to encourage more natural history studies in subpopulations.

9. Initiate communication with people who have conducted 10-year trials on other late-onset degenerative diseases, such as osteoporosis, for shared lessons.

Participants at the 2002 workshop

Susan L. Ackerman, Ph.D., Associate Staff Scientist, The Jackson Laboratory

Harvey Cantor, M.D. Chair, Dept. of Cancer Immunology, Dana-Farber Cancer Institute

Timothy Clark, Director of Bioinformatics, Millennium Pharmaceuticals, Inc.

Paul D. Coleman, Ph.D., Professor, Department of Neurobiology and Anatomy and Director, Alzheimer's Disease Center, University of Rochester Medical Center

Gabriel Corfas, Ph.D., Children's Hospital, Boston

Peter Davies, Ph.D., Department of Pathology & Neuroscience, Albert Einstein College of Medicine

Prof. C. Forbes Dewey, Professor of Mechanical Engineering/Bioengineering, Massachusetts Institute of Technology

Geoffrey Duyk, M.D. Ph.D., Vice President and Chief Scientific Officer Exelixis, Inc.

Alison Goate, Ph.D., Department of Psychiatry,Washington University School of Medicine

James Heywood ,ALS-Therapy Development Foundation

Rudolph Jaenisch, Ph. D., Professor of Biology, Whitehead Institute

June Kinoshita, Executive Editor, Alzheimer Research Forum

Richard Mayeux, M.D., Director, Behavioral Neurology, Sergievsky Center, Columbia-Presbyterian Medical Center

Eve Nichols, Senior Program Officer, Fidelity Foundations

David Sabatini, M.D., Ph.D., Whitehead Fellow, The Whitehead Institute for Biomedical Research

Dennis J. Selkoe, M.D., Professor of Neurologic Diseases, Harvard Institutes of Medicine

Gabrielle Strobel, Managing Editor, Alzheimer Research Forum

Roger Tsien, Howard Hughes Medical Institute and Dept. of Pharmacology, University of California, San Diego

—Gabrielle Strobel, June Kinoshita