Funding for this research was provided by:
Received: 13 April 2022
Accepted: 20 October 2022
First Online: 15 November 2022
: All methods in this analysis were conducted in accordance with all relevant guidelines and regulations. The Institutional review board of Advarra, Inc. based in Columbia, MD (Protocol ID #: LRG2013PR112) approved the study and allows us to do research based on the data we obtain. We have informed consent that LRG Registry members have signed. In addition, as a patient advocacy organization that considers the rights of the patient fundamental to its mission, our project, along with all of the other activities of the Life Raft Group, aligns with the Declaration of Helsinki, specifically where it states that the investigator’s duty is solely to the patient, where the subject’s welfare shall always take precedence, especially in areas of ethical consideration, and the analysis is conducted by suitably trained investigators with knowledge of the relevant scientific background and using approved protocols subject to independent ethical review (by our aforementioned IRB). Our IRB is responsible for overall review of our patient registry, from which is the source data for many of our studies. Specific ethics approval is not required for this study, as it is secondary analysis of survey data. Through Advarra, Inc., there is overall ethics approval is in place for the overall research program.
: Not applicable.
: No conflict of interest reported by authors.