INVESTOR NEWSLETTER ISSUE N°3
The World Health Organization (WHO) International Clinical Trials Registry
Platform Dr. Rebecca Kush, CDISC President & CEO Ghassan Karam, Technical Officer at the International Clinical Trials Registry Platform (ICTRP) at the World Health Organization (WHO) in Geneva, gave a very enlightening presentation on the WHO’s ICTRP. ICTRP is a global initiative that aims to make information about all clinical trials involving human beings publicly available. It was established in 2006 in response to demand from countries through the World Health Assembly resolution that called for: "a voluntary platform to link clinical trials registers in order to ensure a single point of access and the unambiguous identification of trials with a view to enhancing access to information by patients, families, patient groups and others." It is felt that trial registration is an ethical responsibility. Additional reasons provided by Ghassan for registering trials included to improve transparency, improve public trust, prevent bias and selective reporting in publications, improve trial design conduct and reporting and, last but not least, to improve health.
FALL 2009
APRIL 2014
For more information, please click here. The ICTRP website is in all 6 official WHO languages: English, French, Spanish, Arabic, Chinese and Russian.
Mr. Karam closed by indicating an interest in expanding the current 20 items dataset (potentially to include a pdf of the protocol and other information), creating a clinical trials results database, with continuous consultation with CDISC and other partners.
CDISC GLOBAL
COLLABORATIONS CDISC staff are regularly involved in projects, attend events and hold discussions with numerous and diverse organizations around the world. Whether it be in Europe, Asia, North America or elsewhere, CDISC works to spread the message of the importance and benefits of utilizing CDISC standards to streamline research. Read below about our thoughts on the recent AMIA conference in San Francisco!
AMIA Joint Summits on Translational
Science Landen Bain, CDISC Liaison to Healthcare The AMIA Joint Summits on Translational Science was held at the Parc 55 Hotel in San Francisco the week of April 7. The joint summit covered Translational Bioinformatics on Monday and Tuesday, and Clinical Research Informatics on Wednesday and Thursday.
Slide during the WHO presentation at the CDISC Europe Interchange
The ICTRP provides a search portal and links to Primary Registries which also link to Partner Registries around the globe. The WHO ICTRP includes data (a 20 element dataset recommended by the ICTRP Advisory Board ~7 years ago) from ~15 registries around the world with plans to include ~8 more in the near future. The dataset is provided through an extension of CDISC ODM from all registries around the globe (with the exception of the U.S.
clinicaltrials.gov).
The agenda included a CDISC Tutorial presented by Vojtech Huser and Peter Schaefer at the pre-conference meeting on Monday. The tutorial was described as “an introduction to standards defined by the Clinical Data Interchange Standards Consortium (CDISC) to everyone who needs to understand the impact of CDISC standards on clinical research business processes and tools.” While this was an ‘unauthorized’ training, it presented CDISC in a positive light.
CDISC was presented again on Thursday afternoon, during a presentation of four scientific papers on “Using Electronic Health Records for Research in Multiple Settings.” Christel Daniel, who leads the Semantic Work Group of the EHR4CR project in Europe, presented a paper with the title
CDISC WEBSITE LINK
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