Change log

1.0

  • Item Consanguinity:

    In version 1.0, it was clarified that this item refers to the individual’s biological parents.

  • Item Genetic confirmation:

    In version 1.0, the definition of this item was changed to allow the value Yes to be specified for individuals who are reported to have a genetically confirmed diagnosis of LGMD, but where the registry is not able to verify the variant(s) and their pathogenicity.

  • Item Creatine kinase:

    This item was removed in version 1.0.

  • Item Creatine kinase date:

    This item was removed in version 1.0.

  • Record Patient-reported outcome measure:

    In version 1.0, it was clarified that patient-reported registries should add the questionnaires of the outcome measures they intend to collect to their registry and calculate the score from the replies.

  • Item Patient-reported outcome measure:

    Before version 1.0, this item was erroneously marked as non-mandatory.

  • Item Patient-reported outcome measure score:

    Before version 1.0, this item was erroneously marked as non-mandatory.