Registries and databases

 

Team leader: Prof. Karim Wahbi

prof. Karim Wahbi is a cardiologist at the Institute of Myology and in the Department of Cardiology at Cochin Hospital. In 2018, he received 2 prizes during the 26th European Days of the French Society of Cardiology: best young researcher and best poster on the subject of heart failure/cardiomyopathy.

The activities of the Registries and Databases team are dedicated to the development and maintenance of databases, registers, observational studies and cohort follow-ups developed at the Ile de France regional level and the French national level. The objective of these academic or industrial promotion projects is to collect epidemiological data, natural histories, to assess the effect of treatments and to prepare future therapeutic trials.

 

Ongoing projects

Registers

  • National register OPALE (Observatory for patients with Laminopathies and Emerinopathies), Principal investigator Pr Karim Wahbi, operational coordinators Dr G. Bonne, Dr R. Ben Yaou and Prof K. Wahbi. 
  • French Pompe disease register, Principal investigator Prof P. Laforet. 
  • « Becker-Cœur » register in the observational study « Cardiac involvement in Becker’s myopathy: evaluation of prognostic markers », Principal investigator Prof K. Wahbi. 
  • « Mitochondriopathies » register in the observational study « Prospective follow-up of a cohort of adult patients with mitochondrial diseases », Principal investigator Prof P. Laforet. 
  • « GSDIII » register in the observational study « Prospective follow-up of patients with type III glycogenosis », Principal co-investigators Prof P. Laforet and Prof P. Labrune. 

Database

  • Specific locus database UMD-LMNA and UMD-FHL1 coordinated by Dr G. Bonne and Dr R. Ben Yaou.
  • Specific locus database UMD-EMD ccoordinated by Dr Fr Leturcq and Dr R. Ben Yaou.
  • Specific locus database UMD-DMD coordinated by Dr Fr Leturcq, Dr S. Tuffery-Giraud and Dr R. Ben Yaou.

Further details on the registries, databases and clinical trials currently running at the Institute.

 

 

Team members

Prof. Karim Wahbi, cardiologist
Dr Rabah Ben Yaou, neurologist
Khadija Chikhaoui, clinical research associate (CRA)
Nawal Berber, clinical research associate (CRA)
Nadgib Taouagh, clinical research associate (CRA)
Néjette Lallouche, clinical research associate (CRA)

 

Last publications