Dr. Asmaa Al Thani, the Chair of the Qatar Genome Programme (QGP) and Dr. Amel, the Clinical Head of QGP, visited with the 100,000 Genome England project and held meetings with different groups in the program.
July 18th : the team visited the GE leadership team including at Queen Mary’s university; Mr. Dave Brown the chief of architect and informatics at the GE project shared the GE experience in setting up the infrastructure, how they formulated their partnership with the Genomic Medical Centers and he also discussed their Genomic England Clinical Interpretation Partnership (GeCIP).
A useful discussion about their data mining enabling secure access to the academic and research team as well as the GeCIP teams without the need to download any of their data. They explained how they use an embassy environment to allow secure access to the data enabling translational research to improve healthcare, while all the data stays in their warehouse with no downloading allowed, copy & paste was disabled.
The CEO of GE enterprise, has also shared his experience and discussed their framework for industry engagement. He said; Genomics Enterprises recognizes that pharma, biotech and diagnostic company engagement with the 100,000 Genomes Project will be critical for the success of the programme. This industry engagement will be the most effective way of accelerating the development of new diagnostics and treatments. This will undoubtedly result in better care and improved outcomes for patients – not just in the UK but across the world.
July 19th: The team visited Great Ormond Street Hospital NHS foundation trust and met with Prof Lyn Chitty; the chief of the North Thames Genomic Medical centers (GMCs). They discussed their partnership with GE and the patient/sample journey from collection to receiving a report back for discussion at the clinic. Prof Lyn has also shared her experience and achievement in the new development of the Non Invasive Prenatal Diagnosis (NIPD), the QGP team discussed potential collaboration to try and study the feasibility of implementing the test in Qatar and validating its use as a diagnostic tool for genetic diseases.
Dr Asmaa then visited the Royal Brompton Hospital in the afternoon, as a response to an invitation from their managing director to welcome her at the RBH, she was accompanied by Dr. Amel Hassan, clinical head of QGP. This visit was conducted as a follow up following Dr Said Ismail last visit to RBH in April 2016. The QGP team met and was welcomed by a team from the RBH including their CEO, they also met the clinical head of the genetic laboratory and were shown around the genetic facility and the hospital.
Royal Brompton (RB) & Harefield (HH) Hospitals are specialist centers known throughout the world for their expertise, standards of care and research success. As a specialist center, they provide treatment for both adults and children with heart and lung disease.
Inherited Cardiac Conditions are a group of genetic disorders that affect the heart and major vessels, in particular the heart muscle (Cardiomyopathies), the heart rhythm (Inherited Arrhythmia Syndromes) and the aorta (Aortopathy). At present the prevalence of inherited heart disease for Qatar & the Middle Eastern region is unknown, however it may be that the frequency of inherited cardiac conditions is greater than in the UK due to narrow ethnic diversity.
The Inherited Cardiac Condition service at RB & HH is one of the largest and most comprehensive services within the UK. The QGP team had a discussion regarding future collaboration with the RBH as an attempt to use their expertise in clinical interpretation of inherited cardiac condition, to help predict and prevent the major complications of inherited cardiac disease which is often sudden death.