During the Alliance Meeting in Orlando in December of 2015, Rob Goldstein, a member of the Board of Directors and leader of the Research Working Group, had conversations with Alliance members about their research funding practices and what they might like to learn about how other members fund ALS/MND research in their countries. Understanding how and when members fund research will help the Board as they draft the next Strategic Plan.
Following these conversations, throughout 2016, Rob Goldstein, assisted by his colleague Emer Martin at the ALS Therapy Development Institute, designed and distributed a 10-question survey. The five main goals of this survey were to determine:
- How many Alliance members funded ALS/MND research
- How much each organization spent on ALS/MND research
- The proportion spent on basic and clinical ALS/MND research
- The manner in which members make ALS/MND research spending decisions
- The current collaborative trends among members in funding ALS/MND research
The survey was distributed in October of 2016, and responses were collected in December of 2016. All respondents were reporting on their research expenditure during the previous fiscal year, 2015/2016.
Here are some highlights from the data they collected:
- 41 member associations responded to the survey and shared data
- 33 out of 41 organizations indicated that they do fund ALS/MND research in some capacity; 8 out of 41 organizations indicated that they do not fund ALS/MND research
- Alliance members who responded to the survey reported spending a total of $67,168,400 USD (subject to fluctuations in exchange rates)
- North America was the region with the highest reported level of spending (over $40,000,000 USD)
- In most regions, spending on basic research exceeded spending on clinical research
- The most commonly cited research collaboration was Project MinE
Having gathered these insights, it is now useful to consider next steps. We would like to gather more information and refine the information we have to ensure accuracy and clarity. Rob Goldstein plans to give a detailed report on the initial survey results to members during the Annual Meeting in Boston. Then, the Working Group, led by Rob Goldstein, would like to gather more in-depth data through an updated survey and compare members’ spending on research in previous years to current and future spending.
Special thanks to Rob Goldstein and Emer Martin for their hard work and for gathering and sharing these insights on behalf of the Alliance! Questions regarding this data should be sent to the Alliance at firstname.lastname@example.org.