International Collaboration on Cancer Reporting

ABN 69 601 723 960

REPORT TO ILPP

June 2017

1.Executive Summary

2.Organisational overview

2.1Sponsorship

3.Dataset development status

3.1 Published datasets

3.2Datasets in progress

3.3Datasets in planning

3.4Peer-reviewed publications

4.Financial report

4.1 Projected income

4.2Expenditure

5.Staffing

6.Website

1.Executive Summary

The ICCR continues to make excellent progress in dataset development across a broad range of tumour types, both in synchrony with the IARC/WHO Blue Book publications and asynchronously to meet the priorities of users worldwide:

Ten datasets are published to the ICCR website and a further 22 are in the final stages of international review.
A five-year plan intends to continue dataset development in synchrony with IARC/WHO Series publications, (Endocrine, Skin and Ophthalmic datasets) as well as priority datasets for colorectal and breast cancers.
Datasets posted to the ICCR website are progressively accompanied by academic review articles in peer-reviewed journals.
The established ICCR development process is rigorous, evidence based, consultative, and currently supported by over 200 multinational and globally recognised experts from the Dataset Authoring Committees.
The ICCR engages with the relevant specialist international pathology organisations during dataset development, including ISUP, ISGYP, AAOMP and NASHNP – many of whom have contributed financially as affiliated organisations. Others will be involved and affiliated as appropriate with future datasets.
Increasingly, with international moves towards structured reporting, European and other countries are looking to the ICCR as their source for datasets for local use. ICCR website analysis showssearches from Russia, India, South America, France, Spain and Japan as well as countries of the sustaining members of ICCR.

ICCR is actively engaged with key international cancer organisations:

Membership of the AJCC (Chicago)
Membership of the UICC TNM Staging Core Group (Geneva)
Memoranda of Understanding with IARC (Lyon), UICC (Geneva) and EORTC (Brussels)
The International Association of Cancer Registries is represented on the ICCR Steering Committee.
The educational value of ICCR datasets is recognised by a focus on Lower Middle Income Countries including involvement in African Strategies for Advancing Pathology (ASAP) and Global Alliance for an Accurate Diagnosis (Center for Global Health, NIH).

The international IT community is increasingly seeking engagement with ICCR:

The Regenstrief Institute is undertaking to model ICCR datasets and develop LOINC terminologyas an integralpart of ICCR dataset publication, thusfacilitating electronic implementation worldwide.

SNOMED CT International, with support from the University of Nebraska is working through iPalm and with ICCR, CAP, RCPA and RCPath to harmonise SNOMED CT terminology to support eHealth implementation.

The ICCR is greatly indebted to our sustaining members for financial support, most of whom are members of ILPP. In particular, we are grateful to and dependent upon, the RCPA for legal assistance, financial management and for allowing our Project Manager, Meagan Judge to play a critical role in ICCR progress.

The ICCR has demonstrated that international coordination is both effective and invaluable to reduce the overall burden of dataset development, and to facilitate electronic implementation of cancer reporting and interoperability of health data worldwide.

On behalf of the ICCR, I would like to thank the contributing members of the ILPP and seekyour continuingfinancial support as we pursue our 5-year plan.

- David Ellis, President ICCR

2.Organisational overview

The International Collaboration on Cancer Reporting (ICCR) was founded by major pathology organisations from around the world to produce internationally standardised and evidence based datasets for the pathology reporting of cancer. Its goal is to improve cancer patient outcomes worldwide and to advance international benchmarking in cancer management.

The ICCR was incorporated as a not-for-profit organisation in September 2014.

The organisational structure is as follows:

The ICCR is supported by membership and sponsorship. Three classes of membership have been established:

Sustaining
Corporate
Individual

Sustaining membership provides the principal amount of funding on which the ICCR depends. There are now seven sustaining members,which are:

The European Society of Pathology (ESP),
The Royal College of Pathologists UK,
The College of American Pathologists (CAP),
The Royal College of Pathologists of Australasia (RCPA),
The Canadian Association of Pathologists (CAP-ACP) in association with the Canadian Partnership Against Cancer (CPAC),
The International Academy of Pathology – Australasian division (IAP-AUS), and
The American Society of Clinical Pathology (ASCP)

Each of the sustaining members is represented on the ICCR Board of Directors (BoD), whichhas strategic oversight of all ICCR operations and financial and legal responsibility for the running of the ICCR. Each sustainingmember has nominated directors as follows:

David Ellis for the Royal College of Pathologists of Australasia (RCPA)
Fred Bosman for the European Society of Pathology(ESP)
Thomas Wheeler for the College of American Pathologists (CAP)
Tim Hellliwell for The Royal College of PathologistsUK (RCPath)
John Srigley for the Canadian Association of Pathologists - Association Canadienne des Pathologistes (CAP-ACP) in association with the Canadian Partnership Against Cancer (CPAC)
Richard Scolyer for the International Academy of Pathology – Australasian division (IAP-AUS),and
James L Wisecarver for the American Society of Clinical Pathology (ASCP), and
Sanchia Aranda, Chief Executive Officer, Cancer Council Australia; and president, UICC

At the BoD in October 2016, David Ellis was re-elected President and John Srigley, Vice president.

The ICCRDataset Steering Committee (DSC) has responsibility for all activities relating to the development of ICCR cancer datasets. The DSC invites representation from all sustaining members, as well as strategic partners such as the International Agency for Research on Cancer (IARC),the European Organisation for Research and Treatment of Cancer (EORTC), and the International Association of Cancer Registries (IACR).

At the BoD meeting in April 2016, David Ellis and John Srigley were appointed co-Chairs of the DSC.

The purpose of the ICCR Editorial/Quality Committee (EQ) is to provide an independent review of each ICCR dataset prior to public consultation to ensure it adheres to ICCR standards. Currently this committee’s function is undertaken by the DSC.

Dataset Authoring Committees (DACs) are convened as needed for the development of specific datasets.

TheBoD, DSC and DAC members are all volunteers that provide their expertise and time altruistically. Administrative support is provided through volunteers from member organisations.

2.1Sponsorship

In addition to membership fees, the ICCR looks for sponsorship to help support the cost of development of datasets. In the last year, 3 such opportunities have come to fruition:

The International Society of Gynecological Pathology (ISGyP) has offered to support the development of gynecological datasets at $6,000USD per dataset. The first of this funding has supported the development of the cervical cancer datasetthat has recently been published.

The Massachusetts General Hospital has offered $20,000USD to support the development of a Central Nervous System dataset, currently underway.

The Academy of Oral and Maxillofacial (AAOMP) and the North American Society of Head and Neck Pathology have both agreed to donate $2,500USD to support the development of the Head & Neck suite of datasets.

Further opportunities are being sought.

3.Dataset development status

The core business of the ICCR is to develop internationally validated and evidence-based pathology datasets for cancer reporting for use around the world.

The ICCR Dataset development follows an agreed process that is outlined in Guidelines for the Development of ICCR Datasets ( As the pace of development has increased this process has been revised, including the incorporation of a new role, Series Champion.

Previously, once a specific cancer dataset(s) was identified for development, the ICCR Dataset Steering Committee (DSC),invited an appropriately qualified expert pathologist to take on the role of Chair of the Dataset Authoring Committee (DAC). This process still works very successfully for development of single datasets, however, with the development of dataset series such as the Genitourinary (GU) and the Head and Neck (H&N) series, the ICCR introduced a Series Champion role to oversee the development process, support the work of the dataset chairs and ensure harmonisation across the series.

3.1Published datasets

As at May 2017, the ICCR has ten published datasets:

Prostate carcinoma (radical prostatectomy specimens) whichhas been developed for radical prostatectomy specimens for prostate carcinoma. It is not applicable for core biopsies and transurethral resection (TUR) specimens.
Invasive melanoma which has been developed for reporting of primary cutaneous invasive melanoma.
Lung cancer which has been developed for resection specimens of lung cancer. It is not applicable for bronchoscopic and transthoracic biopsy specimens.
Endometrial carcinoma which covers resection specimens of endometrial cancers. It is not applicable for small endometrial biopsy specimens.
Carcinoma of the ovary, fallopian tube and primary peritoneal site, which has been developed for resection specimens of primary borderline and malignant epithelial tumours of the ovary, fallopian tubes and peritoneum. It does not include non-epithelial ovarian neoplasms such as germ cell or sex cord stromal tumours or other primary peritoneal neoplasms such as mesothelioma.
Mesothelioma in the pleura and peritoneum which covers both biopsy and resection specimens.
Thymic epithelial tumours which covers resection specimens of the thymusiethymoma, neuroendocrine tumours of the thymus and thymic carcinoma but excludes germ cell tumours and other primary thymic neoplasms.
Neoplasms of the heart, peritoneum and great vessels which covers biopsy and resection specimens for primary tumours of the heart, pericardium and great vessels, including both benign and malignant entities, and excluding haematolymphoid neoplasms and mesothelioma.
Carcinoma of the cervix which covers pathology reporting of primary cervical carcinomas. Specimens include loop/cone excisions, trachelectomies, simple and radical hysterectomies and exenterations. The dataset applies to epithelial neoplasms only and does not apply to small biopsy specimens.
Intrahepatic, and perihilar cholangiocarcinoma and hepatocellular carcinomawhich covers resection specimens of the liver with intrahepatic, and perihilar cholangiocarcinoma and hepatocellular carcinoma. It does not apply to neuroendocrine carcinomas, hepatoblastoma, carcinomas of the extrahepatic bile ducts, gall bladder and benign lesions such as adenomas.

Both the Endometrial and Lung cancer datasets have also been updated to reflect changes the World Health Organisation (WHO) publication on Classification of Tumours for these cancers.

3.2Datasets in progress

Production of datasets has significantly increased with 22 datasets in progress:

3.2.1Genitourinary (GU) suite

Datasets in the GU series are divided into the following anatomical groups:

Prostate: which includes 3 datasets covering core/needle biopsy, transurethral resection (TURP) and includes an update to the existing radical prostatectomy dataset (co-chairs: James Kench, Australia and Lars Egevad, Sweden)
External genitalia: which includes 3 datasets covering testis, penis and a dataset for retroperitoneal lymphadenectomy (chair: Dan Berney, UK; chair for penile resection: Cathy Corbishley, UK)
Urothelial: which includes 4 datasets covering ureter, bladder and urethra as well as a dataset covering transurethral resection and biopsy specimens (chair: David Grignon, USA)
Renal: which includes 2 datasets covering both nephrectomy and renal biopsy specimens (co-chairs: John Srigley, Canada and Brett Delahunt, New Zealand).

8 of the GU datasets covering Prostate, Renal, and External genitalia have completed the open consultation phase and are nearing publication. The 4 datasets in the Urothelialgroup are now ready for open consultation.

TNM8

The Tumour-Node-Metastasis (TNM) staging system covers the majority of cancers and is used very widely across the world. It is therefore a key prerequisite to the development of the datasets. The 8th edition was published by AJCC and UICC at the end of 2016. Due to its importance in cancer datasets the publication of the GU series was deferred until after the release of TNM8 and then updated to include the new TNM. This process is underway.

3.2.2Head and Neck (H&N) suite

In synchrony with the upcoming release of theWHO publication on Classification of Tumours for H&N, a series of 9 datasets are nearing open international consultation prior to final review and publication:

Nasal cavity and paranasal sinuses (Chair: Alessandro Franchi)
Nasopharynx and oropharynx (Chair: Jim Lewis)
Larynx, hypopharynx and trachea (Chair: Tim Helliwell)
Oral cavity (Chair: Susan Muller)
Salivary glands (Chair: Raja Seethala)
Odontogenic tumours (Chair: Edward Odell)
Ear (Chair: Lester Thompson)
Nodal excisions and neck dissection (Chair: Martin Bullock)
Mucosal melanoma (Chair: Lester Thompson)

As noted above, the ICCR has instituted a ‘Series Champion’ role as part of the development structure whenever a Dataset Series is undertaken. Dr Lester Thompson, a pathologist fromWoodland Hills, California, has extensive expertise in Head and Neck Pathology and was appointed to be the Series Champion for this ICCR series.

The 9 datasets are progressing well and expected to be published mid 2017.

3.2.3CNS

A dataset for CNS tumours is in progress under the chairmanship of Prof David Louis. This dataset is being developed with generous financial support from The Massachusetts General Hospital. Publication of this dataset is expected in early 2018.

3.3Datasets in planning

The ICCR DSC has drafted a 5 year plan for the development of over 85 individual cancer datasets. This plan is based on the known IARC/WHO ‘blue book’ schedule, cancer staging updates, and scheduled revisions.

The following Datasets/Dataset series are currently being planned in synchrony with the WHO monographs on tumours (Blue Books):

Endocrine series
Skin
Ophthalmic

3.3.1Breast and Colorectal Datasets

The ICCR policy of producing datasets in synchrony with the IARC/WHO “Blue Book” publications has meant that colorectal carcinoma and breast carcinoma have not yet been addressed. The Dataset Steering Committee is committed to commencing these two very important datasets in 2017 and we are currently exploring funding possibilities.

3.4Peer-reviewed publications

A key step in the development of ICCR datasets is the production of an accompanying article submitted to a peer-reviewed journal. To date,6 dataset related articles have been published:

Dataset for reporting of carcinoma of the cervix: Recommendations from the International Collaboration on Cancer Reporting (ICCR). McCluggage WG, Judge MJ, Alvarado-CabreroI, Duggan MA, Horn L-C, Hui P, Ordi J, Otis CN, Park KJ, PlanteM, Stewart CJR, Wiredu EK, Rous B, HirschowitzL.2017.International Journal of Gynecological Pathology. In press.

Dataset for reporting of Thymic Epithelial Tumours: Recommendations from the International Collaboration on Cancer Reporting (ICCR).Nicholson AG, Detterbeck F, Marx A, Roden AC, Marchevsky AM, Mukai K, Chen G, Marino M, den Bakker MA, Yang WI, Judge M, Hirschowitz L. Histopathology. 2017 Mar;70(4):522-538. doi: 10.1111/his.13099. Epub 2016 Nov 28
Dataset for Reporting of Malignant Mesothelioma of the Pleura or Peritoneum: Recommendations From the International Collaboration on Cancer Reporting (ICCR). Churg A, Attanoos R, Borczuk AC, Chirieac LR, Galateau-Salle F, Gibbs A, Henderson D, Roggli V, Rusch V, Judge MJ and Srigley JR (2016). Arch Pathol Lab Med.[Epub ahead of print]
Dataset for reporting of ovary, fallopian tube and primary peritoneal carcinoma: Recommendations from the International Collaboration on Cancer Reporting (ICCR). McCluggage WG, Judge MJ, Clarke BA, Davidson B, Gilks CB, Hollema H, Ledermann J, Matias-Guiu X, Mikami Y, Stewart CJR, Vang R and Hirschowitz L. (2015). Mod Path 28(8):1101-1122.
Dataset for Pathology Reporting of Cutaneous Invasive Melanoma Recommendations From the International Collaboration on Cancer Reporting (ICCR). Scolyer RA, Judge MJ, Evans A, Frishberg DP, Prieto VG, Thompson JF, Trotter MJ, Walsh MY, Walsh NMG, Ellis DW. (2013).Am JSurgPathol. 37(12):1797-814.
Dataset for Reporting of Lung Carcinomas: Recommendations From International Collaboration on Cancer Reporting Jones KD, Churg A, Henderson DW, Hwang DM, Ma Wyatt J, Nicholson AG, Rice AJ, Washington MK, Butnor KJ. (2013) Arch Pathol Lab Med. 137(8): 1054-1062.
Dataset for Reporting of Endometrial Carcinomas: Recommendations From the International Collaboration on Cancer Reporting (ICCR) Between United Kingdom, United States, Canada, and Australasia. McCluggage WG, Colgan T, Duggan M, Hacker NF, Mulvany N, Otis C, Wilkinson N, Zaino RJ and Hirschowitz L (2012).International Journal of Gynecological Pathology 32:45-65.
Dataset for reporting of prostate carcinoma in radical prostatectomy specimens: recommendations from the International Collaboration on Cancer Reporting. Kench, JG, Delahunt B, Griffiths DF, Humphrey PA, McGowan T, Trpkov K, Varma M, Wheeler TM, Srigley JR.Histopathology 2013, 62, 203–218.
Ellis DW and Srigley J (2015). Does standardised structured reporting contribute to quality in diagnostic pathology? The importance of evidence-based datasets. Virchows Arch [Epub ahead of print] PMID: 26316184.

4.Financial report

A budget was proposed and accepted at the 28th Feb/1st March2017BoD meeting.

The following is a budget summary:

4.1 Projected income

As at 28th Feb/1st March 2017, the ICCR has a balance of $143,026.87 AUDwith a projected income for 2017of $117,064AUD.

Income is derived from:

Foundation member fees
Other donations
Sponsorship

4.2Expenditure

Expected expenditure to March 2018is$145,214AUD.

Items of planned expenditure are:

Category / Item
Business costs / Legal fees
Insurances
Auditor
Bank fees
Meetings / Teleconference/web meetings
ICCR face to face meetings*
Project Manager meetings/update
Travel to international meetings
Promotion & communication / Web services
Promotional flier
Domain specific email
Domain name registration
Business cards
Staffing / ICCR Project Manager
PMO
Equipment/expenses
Dataset development / Software
Medical Illustrator
Copyright
Open access for publications
Miscellaneous / Stakeholder db rework

* Note, this item includes no travel related fees, it relates to costs for room and equipment hire etc for the meetings.