Crowdfunding for stem cell-based interventions to treat neurologic diseases and injuries
Citation Manager Formats
Make Comment
See Comments
This article requires a subscription to view the full text. If you have a subscription you may use the login form below to view the article. Access to this article can also be purchased.
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
AAN Members
We have changed the login procedure to improve access between AAN.com and the Neurology journals. If you are experiencing issues, please log out of AAN.com and clear history and cookies. (For instructions by browser, please click the instruction pages below). After clearing, choose preferred Journal and select login for AAN Members. You will be redirected to a login page where you can log in with your AAN ID number and password. When you are returned to the Journal, your name should appear at the top right of the page.
AAN Non-Member Subscribers
Purchase access
For assistance, please contact:
AAN Members (800) 879-1960 or (612) 928-6000 (International)
Non-AAN Member subscribers (800) 638-3030 or (301) 223-2300 option 3, select 1 (international)
Sign Up
Information on how to subscribe to Neurology and Neurology: Clinical Practice can be found here
Purchase
Individual access to articles is available through the Add to Cart option on the article page. Access for 1 day (from the computer you are currently using) is US$ 39.00. Pay-per-view content is for the use of the payee only, and content may not be further distributed by print or electronic means. The payee may view, download, and/or print the article for his/her personal, scholarly, research, and educational use. Distributing copies (electronic or otherwise) of the article is not allowed.
Letters: Rapid online correspondence
REQUIREMENTS
You must ensure that your Disclosures have been updated within the previous six months. Please go to our Submission Site to add or update your Disclosure information.
Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.
If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.
Submission specifications:
- Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
- Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
- Submit only on articles published within 6 months of issue date.
- Do not be redundant. Read any comments already posted on the article prior to submission.
- Submitted comments are subject to editing and editor review prior to posting.
You May Also be Interested in
Cutaneous α-Synuclein Signatures in Patients With Multiple System Atrophy and Parkinson Disease
Dr. Rizwan S. Akhtar and Dr. Sarah Brooker
► Watch
Related Articles
- No related articles found.
Topics Discussed
Alert Me
Recommended articles
-
Review Articles
How common are the “common” neurologic disorders?D. Hirtz, D. J. Thurman, K. Gwinn-Hardy et al.Neurology, January 29, 2007 -
Global Perspectives
Worldwide status of clinical experimentation with stem cells in neurologic diseasesDimitrios Karussis et al.Neurology, April 23, 2012 -
Contemporary Issues
Ethical clinical translation of stem cell interventions for neurologic diseaseDavid J. Cote, Annelien L. Bredenoord, Timothy R. Smith et al.Neurology, December 07, 2016 -
Views & Reviews
NINDS epilepsy and autism spectrum disorders workshop reportRoberto Tuchman, Deborah Hirtz, Laura A. Mamounas et al.Neurology, October 02, 2013