Davidson D, Stevenson M, Llonch MV, Hsieh A, Brown TM, Slota C, Fehnel S. Development of a novel patient-reported outcome measure symptoms and impacts of familial chylomicronemia syndrome. J Clin Lipidol. 2020 Jul;14(4):P571.
Lewis MA, Stine A, Paquin RS, Mansfield C, Wood D, Rini C, Roche MI, Powell CM, Berg JS, Bailey, Jr DB. Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment. Genet Med. 2018 Feb;20(2):181-9. doi: 10.1038/gim.2017.93
Raspa M, Sacco P, Candrilli SD, Bishop E, Petrillo J. Validity of a condition specific outcome measure for fragile X syndrome: the Aberrant Behaviour Checklist-utility index. J Intellect Disabil Res. 2016 Sep;60(9):844-55. doi: 10.1111/jir.12264