About CLARITY

The Collaborative for Longitudinal Aortic Research In The Young is collecting longitudinal aortic imaging and clinical outcomes and is combining this data with published data and collaborating registries to create microsimulation models for predicting dissection and mortality over a long-term horizon through childhood and child-bearing years.

CLARITY Inclusion Criteria

We are including any of the following;

  • Classic Marfan syndrome with either FBN1 mutation or history of lens dislocation/subluxation
  • Early-onset/ Neonatal/ Infantile Marfan syndrome with FBN1 mutation
  • Loeys-Dietz syndrome with TGFBR1, TGFBR2, TGFB2, TGFB3, SMAD2, or SMAD3 mutation

  • Vascular Ehlers-Danlos syndrome with COL3A1 mutation

  • Arterial Tortuosity syndrome with SLC2A10 mutation

  • Shprintzen-Goldberg syndrome with SKI mutation

  • Cutis Laxa Type 2B with recessive EFEMP2/FBLN4 mutations

  • ACTA2-associated aortic or arterial disease

  • FLNA-associated aortic or arterial disease

  • LOX-associated aortic or arterial disease

  • MYLK- associated aortic disease

  • MYH11- associated aortic disease

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Clinician Resources

The Montalcino Aortic Consortium (MAC) (https://www.montalcinoaorticconsortium.org)

Loeys-Dietz Syndrome Foundation Canada (https://loeysdietzcanada.org/)

Marfan Foundation (https://marfan.org/)

vEDS collaborative (https://thevedsmovement.org/research/veds-collaborative/)

vEDS movement (https://thevedsmovement.org/)

Loeys-Dietz Syndrome Foundation (https://www.loeysdietz.org/)

GenTAC Alliance (https://www.gentacalliance.org)

The John Ritter Foundation for Aortic Health (https://johnritterfoundation.org/)