Process for Applying to Use the Cavernous Malformation Registry Data
The following is our process to review and approve research studies interested in Registry data to ensure future studies benefit people with cavernous malformations of the brain and spinal cord.
- The investigator contacts the Cavernous Malformation Registry by email to firstname.lastname@example.org. Please include your name, position, institution, and a brief description of your research interest.
- The Alliance to Cure Cavernous Malformation will set up a call to discuss your needs and review the Registry resources and procedures. We provide feedback to the investigator regarding the Registry's capacity to address the research question.
- The investigator may be asked to develop and submit a research proposal (below). A full research proposal will not always be required - this may be waived for limited use of the Registry on a case-by-case basis.
- The Research Committee decides whether to approve the proposal based on the review criteria (below). Based on the Research Committee’s decision, there may also be an opportunity for the investigator to revise their initial proposal with feedback.
The Alliance to Cure Cavernous Malformation Research Committee will be a minimum of a three-person committee. It may consist of members of the Alliance to Cure Cavernous Malformation's science staff, the Scientific Advisory Board, Clinicians at Centers of Excellence, the Board of Directors, and/or members of the CCM patient community.
When reviewing a Registry research proposal, Research Committee members are asked to consider the extent to which the proposed research meets the following criteria. The Committee recognizes that some of these criteria will not apply to all research proposals.
- Research focuses on issues and concerns known or believed to be important by people with CCM.
- Research is scientifically rigorous.
- For proposals that involve obtaining additional data not already collected, it is feasible to collect the new data.
- Research has the potential to answer an important question definitively.
- The willingness of the investigator to publish and share their findings with the broader scientific community
Data sharing policies
The Alliance to Cure Cavernous Malformation aims to provide its resources readily, meaning that we will work with any investigator, at any institution, anywhere in the world, who is conducting valid research aligned with our mission of driving research for better treatments and a cure for CCM.
Pricing for studies using Cavernous Malformation Registry data and other resources is based on the level of effort associated with the study. It can include the recovery of costs incurred to create existing resources and the projected costs of study-specific efforts. Please contact us for more information, including estimates.