Funding Research by Others
What if you can't find anyone to work on your condition? There are very creative ways to encourage research on your condition. You can offer to work in the researcher's lab if you are nearby. You can find other organizations that have similar concerns about a body system—for example, both tuberous sclerosis and Sturge Weber syndrome are concerned with angiogenesis (blood vessel growth). The organizations associated with the condition can meet with researchers together to see if together they can fund a project.
Many organizations fund research done by a variety of laboratories. These organizations usually have an application process and subsequent review process. Sometimes the organization develops a request for proposals (RFP), and other times solicits any and all research.
Here are resources for research proposal requests:
Evaluating Research Proposals
When evaluating research proposals, here are two strategies used by different organizations in the review process:
"Please review all grant applications and provide two scores for each proposal.
Score A should reflect the scientific merit of the proposal including rationale and design of the study.
Score B should reflect how well the proposal meets the objective of ______'s grants program in funding clinical or scientific studies that can lead to improved diagnosis or treatment of ___________, including projects that provide improved understanding of disease pathogenesis. This score can also reflect the need for seed funding and the likelihood that the project will generate pilot data that substantially increases the likelihood of subsequent funding by NIH or other organizations.
Please use the NIH scale of 1.0 to 5.0 (for example, 2.4), with 1.0 indicating the highest level of enthusiasm for funding. Scores of 1.0 - 3.0 are consistent with a favorable recommendation, while scores in the 3.1 - 5.0 range would reflect a recommendation not to further consider funding."
"The Barth Syndrome Foundation has specified three criteria against which all our grant proposals are evaluated (and we ask our reviewers to fill out a rating sheet that reflects these criteria, with 1 being the highest and 5 being the lowest possible scores.) We publish the following:
Grant applications will be reviewed by the BSF Scientific and Medical Advisory Board (and, when needed, selected outside reviewers), and recommendations will be forwarded to the BSF Board of Directors. The proposals will be scored on the basis of:
1. Importance and impact – the extent to which the research outlined could make a significant contribution to the understanding of Barth syndrome or the treatment of the disorder.
2. Feasibility – the qualifications of the investigator(s) to carry out the proposed work, based on expertise, experience, commitment; as well as the availability of all the elements required for the project (such as technology, reagents, and human subjects)
3. Prospect of Long-term Funding – the likelihood of subsequent NIH or other major funding for any potential follow-on work (if appropriate)"
Another organization's form can be viewed here.
Decisions and Collaboration
Making decisions about how much and what research to fund is very complicated, but well within the scope of advocacy organizations. This is exemplified by the long time, extensive involvement of organizations such as the Cystic Fibrosis Foundation, the Hereditary Disease Foundation and the National Tay-Sachs & Allied Diseases Association.
Genetic Alliance wholeheartedly supports collaboration between voluntary genetic organizations, advocacy organizations and the research community to promote and coordinate rare condition research efforts.
Copyright Options for Sharing Information
If your organization is funding research, one option you might consider when looking into copyright solutions is to create an open leasing option through a company like Creative Commons. This will allow your research to be easily accessible to the world at large for inter-organization sharing. Another option can be seen through Autism Speaks' policy on grant funded research which enables the material produced to be freely accessed through PubMed’s central archive. These open copyright policy will enhance the flow of information between private organizations and the public.
Internal Links
- Barriers to Rare Disease Research
- Benefits of Collaboration with Advocacy Organization Community
- Blood and Tissue Banks
- Consumers and Researchers
- Educating Membership about Research
- Facilitating Quality Research
- Getting Needs onto the Research Agenda
- Genetic Privacy
- Orphan Drug Application
- Patient's Bill of Rights
- Promoting Research
- Registries
- Research Models
