At long last, plans are moving forward to establish a national mesothelioma patient registry in the United States. A key meeting of experts planning the registry will be held on Tuesday March 26, 2019 in Bethesda. The meeting will include panel presentations by mesothelioma experts from CDC and NIOSH, and will include a substantial opportunity for stakeholders to provide to suggestions and comments.
The long hoped for registry is moving into place after years of efforts to obtain funding to to put a national registry in place, which already has been done for other rare diseases. The funding and registry are coming to fruition because of the tireless efforts of the Mesothelioma Applied Research Foundation, mesothelioma patients, and a wide range of advocates for those patients. The advocates include a bi-partisan group of federal legislators, doctors, hospitals, medical researchers, the Department of Defense and others. More specifically, the meeting is a result of a $100,000 appropriation for the registry that was included in the Fiscal Year 2019 (FY19) Labor, Health and Human Services, and Education (Labor/HHS) Appropriations bill. The funds are provided through the Centers for Disease Control (CDC), and specifically through the National Institute for Occupational Safety and Health (NIOSH).
The Mesothelioma Applied Research Foundation is by far the pre-eminent 501(c)(3) nonprofit organization working to fund research to eradicate mesothelioma. The Foundation’s web site describes programs to bring together thought-leaders in the field to identify paths to cures, including funding of promising and peer-reviewed research, education, support, and advocacy. The March 25 patient registry meeting in Bethesda will be an adjunct to the Foundation’s three day, annual International Symposium on Malignant Mesothelioma.
The creation of a national registry is a valuable step forward for patient treatment – and medical research – for many reasons. A primary benefit is that a national registry facilitates more rapid communications between doctors, patients, and the drug companies involved in clinical trial for new therapies against mesothelioma. For example, a sponsor of a clinical trial involving peritoneal mesothelioma could use the patient registry to relatively quickly identify doctors and peritoneal mesothelioma patients who might be interested in the clinical trial. The communications initially would be indirect because patient data is anonymized, but the communications potentially could become direct if a patient chooses to accept direct information.
The March 26, 2019 meeting in Bethesda provides a key opportunity for stakeholders to learn more about existing mesothelioma data collection programs, and to provide comments and suggestions. As explained by the Foundation at this page, “the program … will begin by examining existing methods of tracking mesothelioma patients in the United States, and will review similar practices in other diseases. A deeper analysis into the usefulness of a mesothelioma patient registry will follow in the form of presentations and a moderated discussion. A full agenda of this task force meeting can found here. The cost to attend this special meeting is $150 and registration is available here (PATIENT REGISTRY TASK FORCE registration category must be selected).”
The agenda is the result of collaboration between national experts. They include David Weissman, MD, Director of the Respiratory Health Division within the National Institute for Occupational Safety and Health (NIOSH), and Harvey Pass, MD, NYU Langone Medical Center. The agenda is pasted below:
AGENDA – PATIENT REGISTRY TASK FORCE
Workshop on Potential Usefulness and Feasibility of a U.S. National Mesothelioma Registry
Tuesday, March 26, 2019
Location: Hyatt Regency, Bethesda, MD
Agenda (7.5 hours total):
Introduction and Charge
8:00 AM (10 min): Welcome and Introduction to Workshop
Mary Hesdorffer, Mesothelioma Applied Research Foundation
8:10 AM (10 min): Congressional Charge to Examine Feasibility of a National Mesothelioma Registry
David Weissman, NIOSH
8:20 AM: 5 minute discussion
All subsequent talks 20 minutes total (15 minute talk / 5 minute discussion), except as noted
Current Mechanisms for Mesothelioma Surveillance
8:25 AM: (20 min): Overview of CDC-Supported Cancer Surveillance Programs and Relevance to Mesothelioma
S. Jane Henley, CDC
CDC contributions such as National Program of Cancer Registries, data visualization tool, available analytic data. Overview of currently-available mesothelioma statistics. Note factors such as geographic distribution that might allow targeting of registry efforts. Barriers and potential solutions to rapidly acquiring and using identifiable information to facilitate delivery of services and research.
8:45 AM (20 min): Mesothelioma Mortality Surveillance, 1999‒2017
Jacek Mazurek, CDC-NIOSH
Usefulness of mortality surveillance – what kind of information does it provide? Findings and trends that might assist in targeting of registry efforts
9:05 AM (20 min): Identification and Tracking of Individuals with Mesothelioma by State/Local Cancer Registries and Nationally Through Participation in the NCI-SEER Program
Dennis Deapen, USC
How do state/local cancer registries obtain data, what data do they obtain, introduction to interactions with SEER. Mechanisms that could be used by a cancer registry to engage in early case capture and collection of data about risk factors, treatment, outcomes, etc., as part of a national mesothelioma registry. Barriers and potential solutions to rapidly acquiring and using identifiable information to facilitate delivery of services and research.
9:25 AM (20 min): Potential Contributions of State Health Departments to a Mesothelioma Registry
Robert Harrison, California Department of Public Health
Authorities and potential approaches of State Public Health Departments to collecting information about individuals with mesothelioma, sharing that information, and participating in recruitment of patients to the registry. Can State Health Departments contribute? What barriers would need to be overcome?
Lessons from Surveillance and Registries for other Diseases
9:45 AM (20 min): Lessons from the Pediatric and Young Adult Early Case Capture Cooperative Program
Xiao-Cheng Wu, Louisiana State University
Introduction to Early Case Capture Program to increase the speed of pediatric and young adult cancer case reporting– enabling legislation, what it does, how it works, etc. Are there lessons from this program that could be applied to a Mesothelioma registry seeking to rapidly acquire and use identifiable information to facilitate delivery of services and research?
BREAK: 10:05 AM – 10:20 AM (15 min)
10:20 AM (20 min): Lessons from the National Amyotrophic Lateral Sclerosis (ALS) Registry
D. Kevin Horton, CDC-ATSDR
Introduction to the National ALS Registry – enabling legislation, what it does, how it works (in particular its approach to obtaining data, how the data is used, connection to biorepository, etc.). Are there lessons from this program that could be applied to a Mesothelioma registry seeking to rapidly acquire and use identifiable information to facilitate delivery of services and research?
Potential Usefulness of a Mesothelioma Registry
10:40 AM (30 min): Recruiting Mesothelioma Patients to Participate in Clinical Research
Part A (10 min): Federal perspective; Raffit Hassan, NCI
Current needs for clinical research that might be addressed by a registry from the perspective of an NCI researcher. Introduction to NCI National Clinical Trials Network, other current resources for entering patients into clinical trials. Would a registry be a useful addition to current resources? If so, what kind of services would be most beneficial for a registry to provide?
Part B (10 min): Academic perspective; Marjorie G. Zauderer, Memorial Sloan Kettering Cancer Center
Current needs for clinical research that might be addressed by a registry from the perspective of an academic researcher. Is there room to improve upon current resources available to academic researchers for entering patients into clinical trials? Would a registry be a useful addition to current resources? If so, what kind of services would be most beneficial for a registry to provide?
Q and A on Parts A and B: 10 min
11:10 AM (20 min): Supporting Mesothelioma Basic Research
Michael Becich, University of Pittsburgh
Introduction and overview of Mesothelioma Virtual Bank, including services offered to basic researchers and types of research being addressed by the Bank. Are there challenges to sufficient sample acquisition? Could a registry help with sample acquisition?
11:30 AM (20 min): Supporting Mesothelioma Epidemiological Research
Emanuela Taioli, Mt. Sinai School of Medicine
Current needs for epidemiological research (could talk about recent review on environmental exposures to asbestos, for example). Are there challenges to obtaining sufficiently detailed data about demographic and disease characteristics, potential risk factors, etc.? Could a registry help?
LUNCH : 11:50 AM – 1:00 PM
1:00 PM – 3:00 PM: Moderated Discussion
Entire group (will seek input on questions from the broad range of perspectives represented in the group, not just academics but also patients and patient advocates, unions representing workers at high risk for malignant mesothelioma, pharmaceutical industry, legal personnel, etc).
Moderators: Harvey Pass – NYU; David Weissman – NIOSH
3:00 PM – 3:30 PM: Summary and Wrap-Up
Final thoughts from the group – should a registry be pursued?
3:30 PM: Adjourn