NIOSH Asking for National Mesothelioma Registry Input
May 1, 2019
The National Institute for Occupational Safety and Health has begun soliciting public input on the feasibility of establishing a mesothelioma registry.
NIOSH is encouraging doctors, nurses, patients, families and patient advocates to provide recommendations on data collection, enrollment, registry maintenance, confidentiality and the overall usefulness of such a tool if enacted.
Comments must be received by July 8, 2019.
“NIOSH has a strong interest in preventing mesothelioma and helping people with the disease,” according to its outreach effort on Regulations.gov. “Mesothelioma treatments are limited, and survival is generally poor. A registry could address the limitations of existing registries.”
The recent solicitation stems from a U.S. Senate Appropriations Subcommittee bill earlier this year. It allocated $100,000 for a feasibility study to explore a national mesothelioma registry.
Congress already allocates $1.1 million annually to fund the National Mesothelioma Virtual Bank, a biospecimen registry that serves a similar purpose. A national registry would significantly expand that role.
Patients, Researchers May Benefit from Mesothelioma Registry
The Centers for Disease Control, which oversees NIOSH, currently compiles cases of mesothelioma that come through various state or local cancer registries. They are listed in the U.S. Cancer Statistics database.
Those registries are more limited in scope than the proposed national mesothelioma registry. Statistics often take six months or more to reach the local cancer registries, and one to two years before reaching the U.S. Cancer Statistics database.
NIOSH officials believe that patients could benefit from a national registry if it increased awareness and sparked easier access to novel therapies and the ongoing clinical trials.
One of the goals would be a case-finding methodology to identify everyone diagnosed, allowing researchers to use the data to determine incidence, prevalence, risk factors and demographics.
NIOSH Wants Issues Addressed
NIOSH listed 11 questions it is asking potential respondents. The questions cover topics such as improving patient care, facilitating research and enrolling patients.
The following are sample questions:
- Who should have access to the information?
- How could a registry protect the confidentiality of information, yet still be used for patient care and research?
- What types of resources would be needed to establish and maintain or participate in a registry?
- Is there other information that NIOSH should consider in assessing potential usefulness of a registry?
Similar Registries for Other Cancers
For several years, mesothelioma advocates have been lobbying for a national registry, similar to those already funded for breast cancer, cerebral palsy, Alzheimer’s disease, colon cancer and gastrointestinal stromal tumors, among others.
“The CDC already provides information about mesothelioma on its website, but only limited information is currently available about issues such as how people are treated and outcomes of treatment,” Dr. Weissman, NIOSH director of the Respiratory Health Division overseeing the feasibility study, said earlier this year.
According to NIOSH, comments can be submitted electronically through the federal eRulemaking portal. Printed comments also can be mailed to the NIOSH Docket Office, Robert Taft Laboratories, MS-C34, 1090 Tusculum Avenue, Cincinnati, OH 45226.
Written submissions must include: Centers for Disease Control, docket number CDC-2019-0029; NIOSH-327.
Any questions can be sent to NIOSHregs@cdc.gov.all.
All relevant comments, including any personal information provided, will be posted without change.