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Abstract
Objective To characterize the marketplace for direct-to-consumer (DTC) unproven stem cell-based interventions (SCBI) for neurologic diseases and injuries using crowdfunding data.
Methods Search terms were developed from previous empirical studies of DTC businesses and the International Classification of Diseases–11 for neurologic diseases and used to query GoFundMe's internal search engine. Campaigns initiated November 2017–2018 and seeking SCBI for neurologic diseases and injuries (n = 1,030) were reviewed to identify the number of donors, number of Facebook shares, recipient location, funding pledged, funding requested, underlying neurologic condition, treatment location, and treatment facility name.
Results A total of 1,030 crowdfunding campaigns for SCBI for neurologic diseases and injuries requested $33,449,979 and received $5,057,069 from 38,713 donors. The most common neurologic condition identified was multiple sclerosis (MS) (n = 404, 35.5%). Of campaigns naming specific destination facilities (n = 392), the most common clinical settings identified were the Stem Cell Institute in Panama City, Panama (n = 91, 23.2%), StemGenex in San Diego, California (n = 44, 11.2%), and Clinica Ruiz in Puebla, Mexico (n = 36, 9.2%).
Conclusions MS dominated the total number of crowdfunding campaigns. Most campaigns were linked to individuals from regions geographically proximal to destination facilities advertising SCBI for particular neurologic diseases. Most of the clinical destinations were located in comparatively high-income countries such as the United States, Mexico, and Panama. These findings provide considerable insight into the DTC marketplace for SCBI. Analysis of crowdfunding campaigns can be used to develop more targeted patient education initiatives and health policies related to domestic and international travel for unproven SCBI.
Glossary
- ASD=
- autism spectrum disorder;
- DTC=
- direct-to-consumer;
- MS=
- multiple sclerosis;
- SCBI=
- stem cell-based interventions
Footnotes
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
- Received February 26, 2019.
- Accepted in final form May 14, 2019.
- © 2019 American Academy of Neurology
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