Breadth of disease and study context
Kevin’s Ultragenyx record includes work related to X-linked hypophosphatemia, glycogen storage disease types Ia and III, and long-chain fatty acid oxidation disorders. The clinical technology portfolio crossed natural-history research, longitudinal monitoring, interventional trials, and post-marketing work. Scientific and therapeutic programs varied; Kevin’s contribution centered on the systems and operating model for collecting and using information.
His CV describes work involving gene-therapy and mRNA research contexts as well as metabolic monitoring. The breadth matters because the technology requirements had to be evaluated against the particular protocol and participant experience rather than imposed as a uniform digital template.
What Kevin led
Responsibilities included patient/site workflows, device and biosensor integration, technology feasibility, platform strategy, quality and validation coordination, data informatics, and service operations. He helped translate protocol intent into operational requirements and coordinated the functions needed to deliver them.
The data environment included patient-reported information, clinical observations, biometrics, endpoint-related data, and measures of study activity. Each type of information carried a different meaning and required an appropriate route into review and action.
LC-FAOD publication trail
The ACMG 2021 supplement of Molecular Genetics and Metabolism includes abstract eP029, describing a long-term, prospective, multicenter, in-clinic and online disease monitoring program for LC-FAOD. Kevin McMahon appears in the author group. The DOI is 10.1016/S1096-7192(21)00116-5.
This is public evidence of contribution to the disease-monitoring research program. It is a conference abstract rather than a full clinical outcomes paper. It should not be extended into unsupported claims about authorship on unrelated disease programs or the efficacy of a therapy.
The longitudinal operating problem
Disease monitoring asks an organization to sustain data collection beyond a single encounter. Patient contact, usable workflows, clinical relevance, support, and continuity of data become part of the research infrastructure. Kevin’s experience joins those requirements to the sponsor’s need for oversight, quality, and coordination.
The same experience is relevant when teams assess the feasibility of a rare-disease network, participant recontact, patient-generated information, or long-term follow-up.
Sources and record basis
- Conference abstractMolecular Genetics and Metabolism · ACMG 2021 supplement, eP029
The LC-FAOD disease-monitoring-program abstract lists Kevin McMahon among its authors. It is a conference abstract in an indexed supplement, not a full outcomes paper.
- Publication identifierLC-FAOD DMP abstract · DOI 10.1016/S1096-7192(21)00116-5
Persistent identifier for the prospective, multicenter, in-clinic and online LC-FAOD disease monitoring program abstract.
The LC-FAOD source establishes conference-abstract co-authorship and disease-monitoring research context. It does not establish pivotal treatment outcomes.