The Benefits of Using Hospital-Based Cancer Registries to Support Clinical Trials
Amid Abu Hmaidan, Director, Hospital Cancer Registry, King Hussein Cancer Center, joins Pharma IQ to discuss the benefits of using hopsital-based cancer registries to support clinical trials and accelerating the progress of clinical trials in the Middle East.
Pharma IQ: Please could tell us a little bit about your current role and responsibilities?
A Hmaidan: King Hussein Cancer Center KHCC is the only cancer center in Jordan, according to some statistics from the national cancer registry; we deal with approximately 64% of cancer cases in Jordan. In 2005 KHCC decided to create an entity that facilitates and promotes clinical research in the institution, one of the early products of this entity was the hospital based cancer registry. With other two colleagues, I was involved since the early stages of the creation of this registry, the choice of data items, software, manpower and other logistics. Currently I am managing this registry with a home based database of around 14000 cases run by three cancer registrars, two of them are Certified Tumour Registrars. Besides building the database and the required application, I am putting the strategy of the registry and working with other institutional entities like the cancer control office and the survivorship program to improve our registry services to be able to accommodate the continuous need for quality data
Pharma IQ: The Middle East is projected to be one of the fastest growing markets for clinical research outsourcing, how are the various stakeholders working together to accelerate the progress of clinical trials in the Middle East?
A Hmaidan: I can’t say that various stakeholders are working together, unfortunately, each country in the Middle East area has its own vision towards clinical trials with some variations of even accepting the concept on the popular level. The good thing is that we started seeing in the horizon some kind of getting everybody together on one table to discuss the issue, one of these efforts go to the recently created “ Middle East Clinical Research Association” that is trying to invite members from hospitals/institutions, CROs/Pharma and regulatory authorities to sit on one table and discuss the clinical trials issue, more work is need on that level. Another positive thing is that we started to see the creation of clear dedicated authorities in some countries, like in Jordan, Saudi Arabia and Abu Dhabi, this will enormously help in accelerating the submission procedures, with time, these authority bodies can meet and set up a unified standard for the area, this is our utmost hope for the future of clinical trials in the Middle East.
I know that we started to witness more and more collaboration on the institutional level, this will increase the rate of recruitment.
Pharma IQ: Cancer registries have played a pivotal role in cancer control, what are the benefits of using hospital-based cancer registries in supporting clinical trials?
A Hmaidan: Data collection and review were identified as major contributors to the cost of randomized clinical trials, on the other hand, cancer registry collects systematically clinical coded data about cancer patients in a given structure, hospital or a country. Every cancer registry follow a certain standard of data abstraction, quality and reporting, for instance, in Jordan we follow the Middle East Cancer Consortium, in the States there are several standards such as the CoC (Commission on Cancer) , SEER (surveillance, Epidemiology and End Results), and others. These standards imply written registry operations and data dictionary and a certain level of data quality
These registries can be used as a source of long term follow up for phase 3 and 4 clinical trials; we are talking about high quality data at a low cost.
Pharma IQ: For anyone interested in attending Clinical Trials Partnership Summit Middle East, what will be your key take home message?
A Hmaidan: I would encourage all stakeholders of clinical trials in the Middle East area to take any opportunity of meeting, networking and exchange of views. This coming conference is a golden opportunity to get us all together to discuss mutual interests and try to find solutions to challenges that are facing us all.
From my end, as a cancer registry director, my home message would be to encourage the creation of hospital based registries, this would help in improving data quality, enhance institutional research, enhance the evaluation of healthcare delivered, and help countries evaluate the burden of certain diseases, not to mention the side benefits like opening more positions for our young people to work as registrars.
Interview conducted by Andrea Charles.
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