Crowdfunding as a Soluion for Funding Orphan Disease Research
According to an article posted earlier this week on the World Economic Forum blog, the Canadian Institutes for Health Research (CIHR) is currently considering abandoning funding for clinical trials. The rationale behind this decision is quite Canadian indeed. According to the CIHR, it is not fair to fund a single trial to the tune of $2 Million at the expense other academic labs. So what, do some suggest, be done to cover clinical trial funding? According to UK author Alexander Masters, the burden of funding clinical trials for orphan diseases should be placed upon the shoulders of private rich benefactors.
Masters proposes that the benefactor-researcher relationship be nurtured by a not-for-profit “dating agency” that matches a rich benefactor that is suffering from the orphan disease with an appropriate academic research lab. Approaching an individual who is either suffering himself from the disease or has a close relative suffering from the disease increases the benefactor’s commitment to the cause and the likelihood that he will continue to fund the clinical trial despite its long and expensive process.
The approach is akin to crowdfunding, whereby an idea is shared with the general public in the hope that it resonates enough with them to take upon themselves the responsibility of funding the entire project. The only difference here is that, instead of looking for an entire crowd to fund the trial, the researcher is hoping for one individual benefactor.
To me, this idea sounds like it has merit and I believe that it should be considered further by scientists looking to study orphan diseases.
To read the original article, visit the World Economic Forum blog.