Relevance of International Committee for Monitoring Assisted Reproductive Technology (ICMART) Registry report 2011

Reflections

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Volume 110, Issue 6, Pages 1032–1033

Authors:

David B. Seifer, M.D.

Abstract:

Reflections on "International Committee for Monitoring Assisted Reproductive Technology: world report on assisted reproductive technology, 2011" by 

Fertility and Sterility

Editorial Office, American Society for Reproductive Medicine

Fertility and Sterility® is an international journal for obstetricians, gynecologists, reproductive endocrinologists, urologists, basic scientists and others who treat and investigate problems of infertility and human reproductive disorders. The journal publishes juried original scientific articles in clinical and laboratory research relevant to reproductive endocrinology, urology, andrology, physiology, immunology, genetics, contraception, and menopause. Fertility and Sterility® encourages and supports meaningful basic and clinical research, and facilitates and promotes excellence in professional education, in the field of reproductive medicine.

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Go to the profile of GEOFFREY DAVID ADAMSON
GEOFFREY DAVID ADAMSON almost 2 years ago

On behalf of ICMART, I would like to thank Fertility and Sterility and Dr. David Seifer for the editorial regarding the ICMART World Report 2011.

 

Dr. Seifer’s editorial has accurately assessed the complexity and effort of compiling such a report, as well as the obvious limitations. The ICMART reports are compiled and analyzed from regional, national and, in a few cases, individual clinic reports. The validity of the data is checked by ICMART with respect to arithmetic calculations, but we have no capability to check further. Some countries and regions, such as the United States, United Kingdom, Australia/New Zealand, Belgium, France, Switzerland, and Latin America, have robust validation systems, but other countries do not. Until they do, which will take years in some cases, ICMART necessarily must rely on the data submitted. However, we do expect continuing improvement in overall data validity, especially because our new electronic data portal released in 2018 has enhanced data validation, which we will improve in the future.

 

Dr. Seifer has noted some very important variables that a multinational registry has not been able to collect, including intention to treat (cycle starts), day of transfer of embryos and complete data on pregnancy outcomes. While the detailed data requested by ICMART is identical for all countries, it is not possible for ICMART to report data that are not collected by countries. It is especially difficult to track intention to treat and outcomes after the first trimester because these data often must be collected by professionals who are not part of the ART center.  However, since we agree these variables are important, we intend to continue asking for them in the future, while recognizing the difficulties many registries will face in providing them.  We are already tracking and reporting “freeze-all” cycles and preimplantation genetic testing (PGT) cycles, as well as some safety variables. Further, while we know it is an approximation, we have developed an algorithm to report cumulative pregnancy rates. Unless we can obtain detailed individualized data in the future we will have to continue with this approach.
 

Another issue is that many countries still collect only aggregate, not individual patient-level data. This limits the ability to do more detailed analysis. However, even countries that do collect and report individual data to their national registries are generally prevented by both jurisdictional and sometimes commercial law from sharing individual patient data outside of their country.
 

We are assessing carefully how best to recommend data collection to national and regional registries given new technologies and new clinical practices in ART, not only in United States but also globally. In this regard, changes in some of the more advanced national registries will inform ICMART as we develop our registry to optimize global ART data collection. Dr. Seifer has made cogent remarks regarding a number of these issues.

 

ICMART has as a major goal the earlier reporting of annual data. We expect to report 2012 by the first quarter next year, 2013 by the second quarter and 2014 by the third quarter. In subsequent years we expect to report the global data within four years of the ART procedures. This four-year delay is necessary to allow a year each for: clinics to collect and report live birth outcomes; local registries to analyze and report their own data; regional registries to report; and lastly ICMART to collect, validate, analyze, write and publish our report. Generally, country and regional registries want to report their own data before ICMART does. We expect the timeliness of this process to be enhanced with our new electronic data portal.

 

We agree that cost, more specifically affordability, is critical and increasingly recognized with respect to its impact on access to ART and clinical and laboratory practice. Some ICMART members have published research on economic aspects of ART, and we intend to identify additional research that can be done using ICMART data to increase our knowledge in this area. (1-4)

 

Apart from affordability, there are two other pillars of the freedom to access health care, namely availability and acceptability. (5) ICMART data provide availability information through documenting the number of clinics. Additionally, by contributing to the visibility, accountability and transparency of ART, our data help to build trust, thereby increasing societal and patient acceptance of this technology.

                                                                                                                                                                       
While access to care is hence multidimensional and not directly measurable, ICMART provides the only global proxy marker of access to infertility care, namely ART utilization, and also disaggregates this proxy marker by country and region.  Our data thus highlight some global inequalities in access to infertility care. We have also recently explored other associations with ART utilization and, by using ICMART data in conjunction with World Health Organization (WHO), World Bank and other data, showed that low rates of ART utilization correlated with greater gender inequality. (6) ICMART agrees with the concept that data are essential to make the invisible visible.

 

Finally, we believe that global ART data collection strongly influences ART practice in a country and region. This has been seen, for example, in Latin America (REDLARA) and Africa (ANARA). In both situations, the development of ART registries has brought clinicians, laboratory and other professionals together, increased cooperation among clinics and countries, increased standardization and improved quality of care through measurement, management and the development of new quality improvement systems. Cooperation, advice and support from ICMART and REDLARA through assisting ANARA with annual publications has increased awareness of the value of the data but also identified areas needing improvement. Such collaboration has also increased the visibility of clinics and countries performing ART, which in turn has increased the number of clinics reporting in a given country and the number of countries reporting. All these consequences of data collection bring increased quality of care, greater societal acceptance and better access.

 

Again, thank you to Fertility and Sterility and to Dr. Seifer for his important perspectives on the ICMART World Report. We are pleased to be able to contribute to our global ART community with this report and the global ART registry. We are continuously working towards more timely and comprehensive reports. We will also continue to develop the global ART registry and assist in the development of national and regional registries so that we can increase both access to and quality of ART procedures for all those who can benefit.

 

Sincerely,

 

 

 

G. David Adamson, MD, FRCSC, FACOG, FACS

Chair, ICMART
Director, Equal3 Fertility

Clinical Professor, ACF, Stanford University

Associate Clinical Professor, University of California San Francisco

 

References:

 

1. Chambers G, Adamson GD, Eijkemans M. Acceptable cost for the patient and society. Fertility and Sterility. 2013 Aug;100(2):319-27. doi: 10.1016/j.fertnstert.2013.06.017.
2. Adamson GD. Economics in the development of embryo transfer policies. IFFS Trilogies. IFFS/ASRM Meeting. Boston, Massachusetts. October 2013.
3. Chambers G, Phuong Hoang V, Sullivan E, Chapman M, Ishihara O, Zegers Hochschild F, Nygren K-G, Adamson GD. The impact of consumer affordability on access to assisted reproductive technologies and embryo transfer practices: An international analysis. Fertil Steril. 2014 Jan;101(1):191-8.
4. Dyer SJ, Vinoos L, Ataguba JE. Poor recovery of households from out-of-pocket payment for assisted reproductive technology. Hum Reprod, 2017, 1-6. doi:10.1093/humrep/dex315
5. Thiede M, McIntyre D. Information, communication and equitable access to health care: a conceptual note. Cad Saude Publica 2008 May;24(5):1168-73.
6. Chambers G, Fitzgerald O, Dyer S, Zegers-Hochschild F, Adamson GD. Gender inequality and ART utilization: an international analysis. European Society for Human Reproduction and Embryology Annual Meeting. Session 38: European and global ART monitoring. Preliminary ICMART World Report 2014. Tuesday, July 3, 2018. Barcelona, Spain.