Coalition Against Major Diseases (CAMD) Becomes a Partner in Massive Global Alzheimer’s Research Data-Sharing Network

May 2, 2016

 

Coalition Against Major Diseases (CAMD) Becomes a Partner in Massive Global Alzheimer’s Research Data-Sharing Network

TUCSON, Ariz. — May 2, 2016 — The Critical Path Institute’s (C-Path) Coalition Against Major Diseases (CAMD) is announcing it will integrate its Alzheimer’s clinical trial data into the Global Alzheimer’s Association Interactive Network (GAAIN) data portal.

GAAIN is an open-access, big data resource that provides scientists with rapid access to Alzheimer’s research data. Data made available through GAAIN are contributed by the world’s foremost Alzheimer’s researchers. It includes information on more than 320,000 research participants from 21 data partners. The GAAIN portal is hosted by the Laboratory of Neuro Imaging at the Keck School of Medicine of the University of Southern California.

“While we have a greater understanding now about the biological underpinnings that lead to dementia, there are still key questions that need to be answered in our search for treatments to stop or slow the progression of the disease,” said Maria Carrillo, PhD, Alzheimer’s Association Chief Science Officer. “Since it opened as a resource tool for the research community early last year, GAAIN has worked to link scientists with information and tools needed to advance research into the root causes of Alzheimer’s and other dementia-causing diseases. The usable research data made available by CAMD through GAAIN will undoubtedly help the scientific community more efficiently tackle these diseases. We sincerely thank CAMD and its members for their contribution to and support of this critical data-sharing network.”

As the leading voluntary health organization in Alzheimer’s care, support, and research, the Alzheimer’s Association directs a variety of efforts, including collaborations such as GAAIN, in the fight against Alzheimer’s worldwide. The data-sharing partnership between GAAIN and CAMD aims to accelerate the research cycle for Alzheimer’s and dementia scientists around the world.

The Need for Data Sharing

CAMD is aimed at developing drug development tools that advance regulatory science and will accelerate the delivery of innovative treatments for Alzheimer’s disease and related neurodegenerative diseases marked by impaired cognition and function.

Roughly 5.4 million people in the US are afflicted with Alzheimer’s disease, with costs reaching as high as $236 billion annually, according to the Alzheimer’s Association’s 2016 Alzheimer’s Disease Facts and Figures report. Worldwide, there are an estimated 46.8 million people with dementia alone. By 2050, the number will rise to over 131.5 million, according to Alzheimer’s Disease International’s World Alzheimer Report 2015. Halting or slowing the progression of this disease will prevent untold suffering and save billions of dollars every year.

“Data sharing is the cornerstone for enabling advances in regulatory sciences that provide a gateway to new innovative treatments for patients with neurodegenerative disorders with impaired cognition and function,” said Stephen Arneric, PhD, Executive Director of CAMD. “Our goal is to create drug development tools in collaboration with our members and regulators to accelerate the delivery of treatments that prevent or slow these diseases, so patients can maintain independence and health-related quality of life.”

CAMD’s Future with GAAIN

CAMD will be assisting GAAIN in the coming year as it expands the network’s data fields to broaden their applicability for data sharing. The increased functionality within the second-generation platform will also include item level clinical outcome assessments of cognitive performance (e.g, ADAS-COG and MMSE). Users will be able to choose from a wider variety of summary statistics, gain increased access to individual study statistics, and experience streamlined communications with CAMD through the GAAIN platform. The high visibility and improved functionality of the GAAIN platform will help drive more interested researchers to the CAMD website, while providing additional sharing capabilities within Alzheimer’s research networks.

About the organizations:

Critical Path Institute (C-Path) is an independent, nonprofit organization established in 2005 with public and private philanthropic support from the Arizona community, Science Foundation Arizona, and the US Food and Drug Administration (FDA). C-Path’s mission is to catalyze the development of new approaches that advance medical innovation and regulatory science, accelerating the path to a healthier world. An international leader in forming collaborations, C-Path has established 12 global, public-private partnerships that currently include over 1,450 scientists from government and regulatory agencies, academia, patient advocacy organizations, and dozens of major pharmaceutical companies. C-Path is headquartered in Tucson, Arizona. For more information, visit www.c-path.org.