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NON-GOVERNMENTAL ORGANIZATIONS (NGO'S)

There are hundreds of private, for-profit and non-profit organizations, working with the United States federal agencies, through the public-private-partnership mechanism. As of 2023, there are no laws or regulations that require these organizations to disclose their participation in these initiatives. 

 

CIAAG believes the public has a right to know when organizations and individuals are involved in these public-private-partnership initiatives and the extent of their activities. 

A number of major organizations and academic institutions are actively engaged in public-private-partnership initiatives in biotechnology, healthcare delivery, public-health policy and their related stakeholders. Below is a short list of some of these entities and their activities. CIAAG believes in full transparency and that all individuals have a right to understand the various factors driving policy changing in the nation. By providing this list of organizations involved in public-private-partnership i initiatives, we seek to inform the citizen stakeholders. 

Building Quality into the Design and Conduct of Clinical Studies: Integrating Quality by Design (QbD) and Risk-Based Monitoring (RBM) Approaches.

Building Quality into the Design and Conduct of Clinical Studies: Integrating Quality by Design (QbD) and Risk-Based Monitoring (RBM) Approaches.

Agenda

Speakers Biographies

Slide Deck - Presentation

Partners In Health
Partnership for DSCSA Governance
U.S. Preventive Services | Prevention TaskForce
United States Preventive Services Task Force (USPSTF)

The U.S. Preventive Services Task Force was created in 1984 as an independent, volunteer panel of national experts in prevention and evidence-based medicine. The Task Force is assigned with the duty of developing policies designed to improve the health of people nationwide. The task force devised a series of recommendations regarding clinical services such as screenings, counseling services, and preventive medications. The Task Force recommendations are based on a review of existing peer-reviewed evidence.

Since 1998, the Agency for Healthcare Research and Quality (AHRQ) has been authorized by the U.S. Congress to convene the Task Force and to provide ongoing scientific, administrative, and dissemination support to the Task Force, making the recommendations created by the task force highly influential in shaping public health policy for in nation.

United States Preventive Services Task Force (USPSTF)

The U.S. Preventive Services Task Force was created in 1984 as an independent, volunteer panel of national experts in prevention and evidence-based medicine. The Task Force is assigned with the duty of developing policies designed to improve the health of people nationwide. The task force devised a series of recommendations regarding clinical services such as screenings, counseling services, and preventive medications. The Task Force recommendations are based on a review of existing peer-reviewed evidence.

Since 1998, the Agency for Healthcare Research and Quality (AHRQ) has been authorized by the U.S. Congress to convene the Task Force and to provide ongoing scientific, administrative, and dissemination support to the Task Force, making the recommendations created by the task force highly influential in shaping public health policy for in nation.

Transforming Clinical Research in the United States Challenges and Opportunities
Human Centered Artificial Intelligence
Going the Distance: Insights into Rare Disease Clinical Studies, Trial Retention & Patient Experience
Association of American Universities:

A Coalition of major US research universities established in 2014 to lobby for the removal of hundreds of federal regulations related to clinical research.

The bureaucratic experiment has slashed by 90% the number of forms used to track key spending, dramatically reduced the amount of time researchers spend doing the paperwork, and nearly eliminated tardy filings, they say. But none of the organs vital to maintaining accountability and transparency appear to have been harmed, they add.

The experiment is part of a larger national effort by U.S. universities to revamp what they argue are costly and wasteful regulations. The rules, whether to protect human patients and research animals or prevent financial conflicts of interest, are often well-intentioned, academic officials say. And sometimes they are a reaction to an egregious breach. But "[t]oo often federal requirements are ill-conceived, ineffective, and/or duplicative," a coalition of major U.S. research universities declared earlier this year. "[T]he time researchers must devote to compliance … unnecessarily reduces the time they can devote to discovery and innovation," they warned.

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