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NCRA History

History of Cancer Registries

The first hospital registry was established at Yale-New Haven Hospital in New Haven, CT, in 1926, and the first central or state registry was established in Connecticut in 1935. In 1956, the Commission on Cancer of the American College of Surgeons supported the development of hospital-based registries by requiring a cancer registry for approved cancer programs. In 1971, the National Cancer Act budgeted monies to the National Cancer Institute (NCI) for research, detection, and treatment of cancer and, in 1973, the Surveillance, Epidemiology and End Results (SEER) Program of NCI established the first national cancer registry. In October 1992, Congress established a National Program of Cancer Registries (Public Law 102-515, The Cancer Registries Amendment Act). The legislation authorized the Centers for Disease Control and Prevention (CDC) to provide funds to states and territories to enhance existing cancer registries and to plan and implement registries where they do not exist. In 1995, 42 states and the District of Columbia received CDC support for cancer registries. Today, the CDC supports forty-five states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island jurisdictions. 

The National Tumor Registrars Association (NTRA)

The National Tumor Registrars Association (NTRA) was chartered on May 14, 1974, in Dallas, TX. The efforts to establish a non-profit, national organization representing cancer registry professionals began in the spring of 1972 in San Francisco, CA, at a two-week seminar of cancer registrars. Seven of the attendants formed an ad-hoc committee to study the need for, and feasibility of, a national organization. The committee members were from different geographical areas of the country and the work was done via long-distance phone calls and snail mail. With the help of the American College of Surgeons, the committee conducted a mail survey of cancer registrars in all facilities with approved cancer programs and with the CEOs of these facilities to determine if an organization was needed, and, if established, would it be supported. The results indicated there were both a need and the required support to move forward.

The ad-hoc committee drafted by-laws and other required documents. The committee was expanded to include additional members to help plan a formal organizational meeting. The meeting was scheduled for May 13-14, 1974, in Dallas. Invitations were extended to cancer registrars across the U.S. Those in attendance reviewed and edited the committee’s drafts of the by-laws and other formal documents. The final versions were voted on by those in attendance and the National Tumor Registrars Association was established. Officers were elected and charged with developing an annual meeting schedule. Annual dues were set at $15. The officers included: Tim Richardson, President, (Ohio); Barbara Lord, President-elect (California); Vida Peterson, Vice President (Pennsylvania); Frances Wedge, Secretary (Washington, DC); Jeanne Ratti, Corresponding Secretary (New Jersey); and Marie Maxfield, Treasurer (Texas). President Richardson appointed Barbara Wade (California) to serve as parliamentarian. 

The original by-laws noted that the purpose of the NTRA was to: promote research and education in Tumor Registration administration so that we may be of greater service to the cancer patient; establish standards of education for tumor registrars; provide a regulated systematic course of study for tumor registrars; raise the level of knowledge and performance of tumor registrars through continuing education; disseminate information to members of this Association regarding current activities, research, and trends the cancer field; and initiate and/or participate in programs to improve and standardize the compiling tumor registry information.

The National Cancer Registries Association (NCRA)

From the moment it was charted, NTRA has been guided by cancer registrars and for cancer registrars. With this principle as a guiding star, during the early 90s, NTRA set about the work of aligning its name with the most current terminology to accurately capture the scope of its members’ work.  After input from members acquired through the Name Change Task Force; chaired by Jennifer Steinburg-Lanier, RRA, ODS; research, and surveys of members, in 1993 NTRA became the National Cancer Registrars Association. The final name was chosen by several rounds of plurality voting by members.

The 1990s would be significant for the organization’s identity, published output, and standard-setting in the cancer registry profession. The organization launched the first National Cancer Registrars Week in 1992 (at the time it was the National Tumor Registrars Week, as the name change was still in process). NCRA’s original newsletter launch in 1974, The Abstract, had spun off any non-technical or governance, advocacy, and committee reporting material into The Connection in 1990, which publishes quarterly today as the organization’s official newsletter. In 1995, NCRA launched the Journal of Registry Management, a peer-reviewed journal which publishes papers on topics related to the management of health registries and the collection, management and use of cancer registry data. In 1997, NCRA's Cancer Registry Management textbook was first published as Cancer Registry Management: Principles & Practice, edited by Carol Hutchinson, Steve Roffers, and April Fritz. 

In the new millennium, NCRA would continue the work of evolving alongside the cancer registry profession and managing a growing membership. Having long used dedicated volunteers and contractors, NCRA achieved self-management by establishing its own paid staff to operate and the necessary infrastructure to sustain and grow in 2001. In 2002, Council on Certification was established as the responsible entity for NCRA’s CTR certification program. Gayle Clutter was appointed as first Council Administrator; future administrators would be elected by credential holders.

NCRA Education Foundation, a non-profit organization with the mission of supporting the advancement of the cancer registry profession through education and research, was formed in 2004. Projects like sponsoring the Annual Educational Conference, producing the Introduction to the Cancer Registry online guide and videos, and the NCRA Education Foundation Ambassador Program to promote the profession to Health Information Management (HIM) schools are all part of the work on the NCRA Education Foundation. 

The work of growth and responsiveness to its membership and the profession is ongoing. After years-long sustained efforts by NCRA and its volunteer leadership to address the workforce needs, recruitment, and retention of cancer registrars, the U.S. Department of Labor’s Bureau of Labor Statistics (BLS) created the registrar-specific title Health Information Technologists and Medical Registrars – SOC 29-9021 in the Standard Occupational Classification System (SOC). This established a distinct, detailed occupation code for employers to appropriately categorize their cancer registrars. In 2024, NCRA and its Council on Certification updated the credential name of CTR, Certified Tumor Registrar, to ODS, Oncology Data Specialist starting January 1, 2024. The new name better aligns with the evolving scope of practice of cancer registrars and reflects NCRA’s continued commitment to evolve with the cancer registry profession.

Timeline

1921
The American College of Surgeons introduced the concept of the registry with the establishment of the Registry of Bone Sarcoma.

1933
Cancer becomes the second cause of death in the United States, after heart disease at number one. It remains one of the top two causes of death in the United States. 

1935
First state central registry was established in Connecticut.

1956
American College of Surgeons required cancer registry for approved cancer programs. 

1971
National Cancer Act budgets monies to the National Cancer Institute for research, detection and treatment of cancer.

1973
First national cancer registry established by National Cancer Institute within the Surveillance, Epidemiology, and End Results (SEER) Program. 

May 13-14, 1974
The National Tumor Registrars Association chartered in Dallas, TX. Officers were elected and charged with developing an annual meeting schedule. 

1974
The Abstract, the National Tumor Registrars Association’s first publication, is released. This newsletter will evolve into The Connection and it’s technically-focused and academic writing will find a new home in the Journal of Registry Management  

1975
Official logo for the National Tumor Registrars Association is adopted.

1976
The National Tumor Registrars Association (NTRA) incorporated in Pennsylvania.

1977
An NTRA rep was appointed as Liaison Member to the Commission on Cancer of the American College of Surgeons. NTRA President Vida Peterson was the first non-physician member appointed to that body, since its inception in 1913.

1981
A home office for NTRA was established at the American Cancer Society's headquarters in New York, NY and a liaison to the Society was appointed.

1982
First NCRA Code of Ethics was adopted.

1983
National Tumor Registrars Association establishes the Certified Tumor Registrar (CTR ®) credential and the first CTR Exam is offered.

1990
The NTRA Newsletter is spun off of The Abstract and renamed The Connection.

1992
Celebrated the first National Cancer Registrars Week, at the time it was called National Tumor Registrars Week as it took place before the name change. 

1992
Name changed to the National Cancer Registrars Association.

1992
Congress establishes a National Program of Cancer Registries (Public Law 102-515). The Centers for Disease Control and Prevention (CDC)’s National Program of Cancer Registries (NPCR) funds state and territorial cancer registries to collect cancer data to measure progress, drive action, prevent cancers, and improve treatment for all people. 

1995
The National Board for Certification of Registrars is formed as a separate board to administer the certification exam.

1995
NCRA launches the Journal of Registry Management, a peer-reviewed journal which publishes papers on topics related to the management of health registries and the collection, management and use of cancer registry data. 

1997
NCRA's Cancer Registry Management textbook is published as Cancer Registry Management: Principles & Practice, edited by Carol Hutchinson, Steve Roffers, and April Fritz. 

1997
NCRA website www.ncra-usa.org is launched. 

2001
Having long used dedicated volunteers and contractors, NCRA achieves self-management by establishing its own paid staff to operate. 

2002
Council on Certification established as responsible entity for NCRA’s CTR certification program.

2003
NCRA logo updated and in use today. 

2004
NCRA Education Foundation, a non-profit organization with the mission of supporting the advancement of the cancer registry profession through education and research, is formed. 

2005
The "Regional Directors" role is expanded and updated to "Advocacy and Technical Practice Directors".

2011
NCRA is awarded its first significant federal funding from a CDC Cooperative Agreement. 

2016
The Connection goes digital and is available exclusively online. 

2017
The Bureau of Labor Statistics (BLS) creates the title Health Information Technologists and Medical Registrars – SOC 29-9021 in the Standard Occupational Classification System (SOC). This establishes a distinct, detailed occupation code for employers to appropriately categorize their cancer registrars. The updated code ensures that the statistics on the cancer registry workforce will be more accurate and provide a clearer understanding of workforce needs; correct salary information that will help recruit and retain qualified individuals; and skill-appropriate personnel will be hired to fill cancer registrar positions at both the central and hospital levels.

2024
NCRA and its Council on Certification updated the credential name of CTR, Certified Tumor Registrar, to ODS, Oncology Data Specialist starting January 1, 2024. The new name better aligns with the evolving scope of practice of cancer registrars and current professional practice terminology.

 
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