Should we adopt an all-or-nothing crowdfunding model? #CrowdSpeak #MSBlog #MSResearch
"The following article in last month's Nature Medicine summarises very succinctly what is happening in the crowd-funding space. It looks as if we are coming to the party late and playing catch-up. I have highlighted some key aspects in bold in excerpts from the article. Based on our survey responses to date appears that the Charcot Project is ahead of the Zeus Trial. A new question that I have added to the survey is whether or not we should adopt an all-or-nothing model of funding. In other words if we define a target should we only start the project if we reach the target or should we use the money to help prime a traditional grant application?"
Shraddha Chakradhar. In new crowdfunding trend, donors decide fate of clinical trials. Nature Medicine 21, 101–102 (2015) doi:10.1038/nm0215-101
Excerpts:
..... trend of crowdfunding has extended beyond general projects, such as those usually found on Kickstarter and Indiegogo, into scientific research, perhaps in part because reduced government spending on science has many biomedical researchers looking for new sources of financial support. With the help of science-specific crowdfunding websites such as Consano.org and MedStartr, researchers are increasingly turning to the public to help bridge the gap between drug development and its implementation in the clinic......
....... But the more recent emergence of this trend in financing clinical trials—organizations such as Cancer Research UK and the newly established Give to Cure Foundation are establishing crowdfunding campaigns specifically intended for clinical trials—raises questions about whether donors or foundations should have the ultimate say in which trials get funded.......
...... Even well-established foundations, such as the London-based Cancer Research UK, have seen the potential in being open with their donor bases. In 2009, the organization launched MyProjects, a concept centered on users being able to direct their donations to a specific cause. When people arrive at the website's main page, they are given the option of choosing from a variety of causes to support, including research into specific types of cancer, basic biological experiments involving tumors and also clinical trials of potential cancer drugs......
..... “One key thing is tangibility,” says Catherine Ferguson, Innovation Project Lead at Cancer Research UK, “It's an inherent part of crowdfunding that isn't inherent in regular funding.” Whether it's a particular type of cancer or a particular therapy, crowdfunding allows for a “more direct relationship with both the researcher and the research,” she adds, emphasizing that this directed approach is good for maintaining relationships with donors.......
...... In December 2014, Cancer Research UK completed its first formal crowdfunding campaign. This campaign was intended to support three different projects, one of which was a clinical trial aimed at testing a vaccine against the Epstein-Barr virus in cancer patients. None of the projects reached 100% of its funding goal, with the clinical trial project only raising about 6% of its £40,000 ($61,000) goal, but the organization chose a so-called fixed-funding model, in which they chose a goal amount but kept none of the funds that were raised if the goal wasn't met. “It felt disingenuous to keep some of the money but not make the research happen,” said Ferguson. “We really wanted to emphasize that the money was for a specific project and if the project couldn't be fully funded, then why keep the money?” Because the campaign wasn't successful, the funds raised were returned to those who pledged the money, but Ferguson said that many of the donors reached out to make contributions to the organizations anyway.......
....... But the more recent emergence of this trend in financing clinical trials—organizations such as Cancer Research UK and the newly established Give to Cure Foundation are establishing crowdfunding campaigns specifically intended for clinical trials—raises questions about whether donors or foundations should have the ultimate say in which trials get funded.......
...... Even well-established foundations, such as the London-based Cancer Research UK, have seen the potential in being open with their donor bases. In 2009, the organization launched MyProjects, a concept centered on users being able to direct their donations to a specific cause. When people arrive at the website's main page, they are given the option of choosing from a variety of causes to support, including research into specific types of cancer, basic biological experiments involving tumors and also clinical trials of potential cancer drugs......
..... “One key thing is tangibility,” says Catherine Ferguson, Innovation Project Lead at Cancer Research UK, “It's an inherent part of crowdfunding that isn't inherent in regular funding.” Whether it's a particular type of cancer or a particular therapy, crowdfunding allows for a “more direct relationship with both the researcher and the research,” she adds, emphasizing that this directed approach is good for maintaining relationships with donors.......
...... In December 2014, Cancer Research UK completed its first formal crowdfunding campaign. This campaign was intended to support three different projects, one of which was a clinical trial aimed at testing a vaccine against the Epstein-Barr virus in cancer patients. None of the projects reached 100% of its funding goal, with the clinical trial project only raising about 6% of its £40,000 ($61,000) goal, but the organization chose a so-called fixed-funding model, in which they chose a goal amount but kept none of the funds that were raised if the goal wasn't met. “It felt disingenuous to keep some of the money but not make the research happen,” said Ferguson. “We really wanted to emphasize that the money was for a specific project and if the project couldn't be fully funded, then why keep the money?” Because the campaign wasn't successful, the funds raised were returned to those who pledged the money, but Ferguson said that many of the donors reached out to make contributions to the organizations anyway.......
..... Not all organizations are opting for an all-or-nothing model. ALS Worldwide, a Wisconsin-based nonprofit that offers support to people and families affected by amyotrophic lateral sclerosis (ALS) and funds research into the disease, launched a crowdfunding campaign in October 2014 for a clinical trial of microneurotrophins, smaller versions of proteins that assist in the development, growth and function of motor neurons. The campaign is hosted on Indiegogo, the same platform used by Cancer Research UK for its campaign, but ALS Worldwide opted for a flexible-funding model in which they can keep whatever funds are raised, even if the goal isn't met.......
....... “It's an excellent thing that science is funded by ordinary people, says Jai Ranganathan, director of SciFund Challenge, a nonprofit that encourages scientists to engage with the public but also helps them crowdfund research. “There's a perception that [federal] money comes from the heavens, but it comes from taxpayers,” which is the ultimate form of crowdfunding, he added......
...... Directed and transparent fundraising allows those who want to be engaged in the scientific process that opportunity. To Ranganthan and other champions of crowdfunded science, engagement with the public is more essential now for science itself. “What is going to keep government funding coming is people engaging with the scientific process,” he says......
....... But for others, like Terry McGlynn, a biology professor at California State University Dominguez Hills, the level of engagement necessary for successful crowdfunding often requires a luxury of time and money. “I have misgivings about the fairness of crowdfunding campaigns,” he says. “The breadth and wealth of your social network shouldn't determine whether your research gets funded or not.”
...... Ultimately, for those attempting to raise funds, crowdfunding allows them to reach a different section of the audience than might otherwise have donated. “Our donors tend to be older and predominantly female,” says Greg Jones, senior press officer at Cancer Research UK, “but we found that with crow-funding, it's younger males that are more involved.” And for those who are trying to raise funds through any means possible, reaching a different slice of potential donors is enough incentive to give crowdfunding a try......
Crowdfunded clinical trials are still nascent. “It's an area we're going to continue to explore,” says Ferguson. “We know that there is an appetite and opportunity for it, but it's a matter of figuring out the right way to go about it.”
....... “It's an excellent thing that science is funded by ordinary people, says Jai Ranganathan, director of SciFund Challenge, a nonprofit that encourages scientists to engage with the public but also helps them crowdfund research. “There's a perception that [federal] money comes from the heavens, but it comes from taxpayers,” which is the ultimate form of crowdfunding, he added......
...... Directed and transparent fundraising allows those who want to be engaged in the scientific process that opportunity. To Ranganthan and other champions of crowdfunded science, engagement with the public is more essential now for science itself. “What is going to keep government funding coming is people engaging with the scientific process,” he says......
....... But for others, like Terry McGlynn, a biology professor at California State University Dominguez Hills, the level of engagement necessary for successful crowdfunding often requires a luxury of time and money. “I have misgivings about the fairness of crowdfunding campaigns,” he says. “The breadth and wealth of your social network shouldn't determine whether your research gets funded or not.”
...... Ultimately, for those attempting to raise funds, crowdfunding allows them to reach a different section of the audience than might otherwise have donated. “Our donors tend to be older and predominantly female,” says Greg Jones, senior press officer at Cancer Research UK, “but we found that with crow-funding, it's younger males that are more involved.” And for those who are trying to raise funds through any means possible, reaching a different slice of potential donors is enough incentive to give crowdfunding a try......
Crowdfunded clinical trials are still nascent. “It's an area we're going to continue to explore,” says Ferguson. “We know that there is an appetite and opportunity for it, but it's a matter of figuring out the right way to go about it.”
"The following are the two projects we have proposed based on interactions with you on the blog. At present the Charcot Project has the most support. This does not mean we can't help kick-start them both."
HSCT
The proposed ZEUS trial below has had a lot of interest from you the readers. To get this project off the ground, and funded, we would need to explore the community's attitude to the trial and whether it is addressing an unmet need. Exchanges and surveys done via this blog are not necessarily representative of the wider community. We as a group have no expertise in HSCT and we would therefore need to include groups and centres that do have expertise. Paolo Muraro's group at Imperial College would be a natural fit us. In fact Paolo has expressed an interest in leading this trial.
What we would need to answer are the following list of questions:
We as a group would want to focus on targeting both EBV and HERVs (human endogenous retroviruses) with antivirals in MS. Before doing a formal clinical trial we would need to do a small exploratory study using a combination of anti-EBV and anti-retroviral drugs. The primary outcome of the study would be to makes sure our anti-EBV drug is safe in combination with HAART (highly-active anti-retrovirals) and whether the combination were suppressing both EBV and HERV activity within the body. We would propose doing a small open-label study of approximately 20 MSers looking at EBV shedding, and EBV viral loads, and HERV activity in the peripheral blood before and after treatment with the combination of anti-virals. If positive data from this enabling study would be used as part of a grant application to fund a phase 2 trial assessing the efficacy of combination antivirals on MS disease activity. Ideally we would want the phase 2 study to be a parallel design placebo-controlled double-blind study, rather than the cross-over study we have just completed for raltegravir (INSPIRE TRIAL).
"This is a community project so please feel free to comment. Thank you."
CoI: multiple
The proposed ZEUS trial below has had a lot of interest from you the readers. To get this project off the ground, and funded, we would need to explore the community's attitude to the trial and whether it is addressing an unmet need. Exchanges and surveys done via this blog are not necessarily representative of the wider community. We as a group have no expertise in HSCT and we would therefore need to include groups and centres that do have expertise. Paolo Muraro's group at Imperial College would be a natural fit us. In fact Paolo has expressed an interest in leading this trial.
- Do MSers understand the immediate risks associated with HSCT?
- Do MSers understand the undefined risks associated with HSCT?
- Would MSers be prepared to be randomised to receive alemtuzumab or HSCT?
- Would British Neurologists be prepared to refer patients for a HSCT trial?
- Do haematology units in the UK have enough capacity to handle a large national MS-HSCT trial?
- What are the economics of HSCT? How do they compare to alemtuzumab treatment?
- Would a non-myeloablative or a myeloablative protocol be best?
- What is the optimal trial protocol?
- Would we only target DMT failures or MSers naive to DMTs?
- Would eligible MSers have to have highly active MS or just active MS?
- Would the NIHR or MRC be prepared to discuss funding a trial of this nature?
- Etc.?
We as a group would want to focus on targeting both EBV and HERVs (human endogenous retroviruses) with antivirals in MS. Before doing a formal clinical trial we would need to do a small exploratory study using a combination of anti-EBV and anti-retroviral drugs. The primary outcome of the study would be to makes sure our anti-EBV drug is safe in combination with HAART (highly-active anti-retrovirals) and whether the combination were suppressing both EBV and HERV activity within the body. We would propose doing a small open-label study of approximately 20 MSers looking at EBV shedding, and EBV viral loads, and HERV activity in the peripheral blood before and after treatment with the combination of anti-virals. If positive data from this enabling study would be used as part of a grant application to fund a phase 2 trial assessing the efficacy of combination antivirals on MS disease activity. Ideally we would want the phase 2 study to be a parallel design placebo-controlled double-blind study, rather than the cross-over study we have just completed for raltegravir (INSPIRE TRIAL).
"This is a community project so please feel free to comment. Thank you."
CoI: multiple