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Why is clinical research and biospecimen participation like hide and seek?
Need “everyday” banking protocols for research and non-research use
Advocacy groups are taking matters into their own hands
Hide and Seek?
Ethical Consideration: Are we making the most of specimens donated by patients?
Too many years of discussion on single use versus tiered consents… need universal action plan
This impasse impedes progress!
Patients want to have confidence in knowing their specimens are appropriately SHARED FOR REAL
Tiered consent forms are one part of a workable solution
We need to put this problem behind us!
ANNALS OF NEUROLOGY SEPTEMBER 2007 Which Way Is The Wind Blowing?
Legal and Regulatory Considerations: Incentives, reimbursement, custodianship, patient demands, market size, IP, technical obstacles, scientific serendipity… Which of these has the greatest influence on development and use of high impact biomarker assays in clinical settings ? Which is not fixable?
“ We must harness the scientific, industrial, and social will to accelerate discoveries into accessible and meaningful clinical applications. Patients, families, friends, and loved one are counting on us…Because in the end, it’s not about you, or me, or the science, it’s about the patient.”
Paula Kim - Research & Patient Advocate
Why We Must Get This Right…
Patient & Advocate Perspectives Don’t Leave Home Without Them Info on Biospecimen Resources: www.tracnetwork.net