Rare Disease Cohorts
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The program RaDiCo aims to provide France with major epidemiological instruments - called cohorts - in the field of rare diseases. 

Key elements

  • 13 cohorts covering 67 rare diseases (RD)
  • Launch of the national call for projects in 2014
  • Initial planned recruitment of over 10,000 RD patients

Objectives of the programme

This program aims to constitute national and European-scale cohorts of patients with rare diseases (RD) for research purposes, with the following objectives:

  • Better describing the natural history of such diseases,
  • Identifying their molecular bases,
  • Establishing phenotype-genotype correlations,
  • Elucidating their physiopathology,
  • Identifying new therapeutic targets,
  • Assessing their medico-economic and societal impact.

The cohorts of the RaDICo program


  • RaDiCo-AC-EYE cohort (Prs. P. Calvas & N. Chassaing)

National cohort on congenital anomalies of the eye: natural history, genetic determinism and improvement of ocular and extra-ocular prognosis for better patient care

  • RaDiCo-ACOSTILL cohort (Prs. S. Georgin-Lavialle & B. Fautrel)

National cohort on pediatric and adult-onset Still's disease

  • RaDiCo-COLPAC cohort (Dr C. Corpechot)

National cohort on the epidemiology, clinical and genetic heterogeneity of the “Low Phospholipid-Associated Cholelithiasis” syndrome

  • RaDiCo-ECYSCO cohort (Dr A. Servais & Pr P. Niaudet)

National and European cohort on cystinosis

  • RaDiCo-DCP cohort (Prs. B. Master & E. Escudier)

Primary ciliary dyskinesias: Identification of specific severity endpoints and search for genotype-phenotype correlations

  • RaDiCo-EURBIO-Alport cohort (Dr L. Heidet & Pr B. Knebelmann)

Alport syndrome: European cohort and database for the search for prognostic biomarkers

  • RaDiCo-FARD cohort (Pr C. Bodemer)

National cohort for the evaluation of the individual burden during rare dermatological diseases

  • RaDiCo-GenIDA cohort (Pr. JL Mandel)

International social network for collecting information on the natural history of rare monogenic forms of intellectual disability and/or autism

  • RaDiCo-IDMet cohort (Prs. A. Linglart & I. Netchine)

National and European cohort on imprinting disorders and their metabolic consequences

  • RaDiCo-MPS cohort (Dr B. Héron)

National cohort on mucopolysaccharidosis in the era of specific treatments

  • RaDiCo-PP cohort (Dr S. Vicart)

National cohort for the clinical, genetic, and socio-economic study of periodic paralysis

  • RaDiCo-PID cohort (Prs. A. Clement & V. Cottin)

National cohort on diffuse interstitial lung disease in children and adults

  • RaDiCo-SEDVasc cohort (Pr. X. Jeunemaître)

National Vascular Ehlers-Danlos Syndrome Cohort

Recent publications

List of accessible publications here.

Management and governance

The RaDiCo research program is coordinated by the National Institute of Health and Medical Research (Inserm). It falls under the responsibility of Professor Serge Amselem of the joint research unit UMR-S 933 “Genetic diseases of pediatric expression” at the Armand Trousseau Hospital, hospital-university group of the Public Assistance-Paris Hospitals (GHU AP-HP), Sorbonne University, and under the joint responsibility of Professors Annick Clément (Sorbonne University) and Paul Landais (University of Montpellier).

Terms and conditions of accessing cohort data

  • Partnership procedures and terms and conditions by request.
  • Each cohort has its own governance structure, which defines the processes for decision-making, communication, management of intellectual property and operating rules.

Detailed information