HIGHLIGHTS
- who: Ines Kapferer-Seebacher from the Ethical Considerations The study was conducted in accordance with the Helsinki Declaration of, as revised in, and was approved as part of the Biobank for Rare Diseases by the Ethics Committee of the Medical University Innsbruck, Austria (study noUN4501). UK patients were recruited according to Ethics Protocol Reference, LO/ , (West London Research Ethics Committee). US study participants were consented through the University of Washington Research Repository of Heritable Disorders of Bone, Blood Vessels and Skin (IRB protocol, ) or Cedars-Sinai Medical Center IRB protocols , and, . The study was part of the . . .

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