ENACCT, the Education Network to Advance Cancer Clinical Trials, has announced that it will close at the end of March. This will be about 10 years since the formation of the organization, which has the stated aim of “addressing persistently low accrual rates in clinical trials by focusing on changing organizational practices and procedures, as well as the quality of community engagement around cancer research.”
The closing, said Founder and Executive Director Margo Michaels, MPH, follows “months of ongoing funding challenges and financial constraints.” The organization's webinars and current programs will continue through March, she said, and she will then become volunteer President of the Board of Directors through 2015.
She said ENACCT will continue offering free public access to its products and tools through the website (enacct.org), and is also exploring the adoption of these products and tools by other organizations.
“This was my life's work and passion, but it was getting increasingly difficult to raise the funds to sustain it,” she said in an interview, adding that with many grants and projects now lasting no longer than a year it was not always feasible to do any long-term organizational planning.
Acknowledging that the task of fundraising was an important part of heading a nonprofit organization, she said the role had become overwhelming and left her with less and less time to focus on planning, projects, and programs.
Prior to establishing ENACCT, Michaels was Branch Chief of Survivor and Public Education for the National Cancer Institute in what had formerly been the Office of Education and Special Initiatives before several subsequent reorganizations.
At NCI and before that at the National Breast Cancer Coalition and Susan G. Komen, she developed educational programs about policy and scientific issues related to cancer clinical trials for advocates, community leaders, and health care professionals.
One of her goals for ENACCT, she said, had been to increase educational resources about trials for local communities, with outreach to patients and the public as well as oncologists and primary care providers.
“We wanted to make clinical trials more accessible and approachable to more people and with better operational efficiency, and to improve how physicians communicate information about clinical trials,” she said, noting the often-quoted statistic that 30 percent of oncologists accrue 70 percent of all patients to cancer clinical trials. This means that patients seeing the 70 percent of oncologists not involved in recruiting may not even be aware of the option of clinical trials, which only enroll about three percent of adult patients: “What's needed is better communication about trials and more meaningful community engagement.”
She said that in general, industry funding has been in decline, and that in the past if she approached 10 pharmaceutical companies for modest grants for a project, she could expect to get five or six of them to sign on. “In one case, only one of 10 companies agreed to fund a $10,000 grant, and since we couldn't raise enough money for the project we had to return the money,” she said.