Process for Applying to Use CFR Data

The following is our process to review and approve research studies interested in the CFR data, to ensure future studies benefit people with single large-scale mitochondrial deletion (SLSMD) disorders.

  1. The investigator contacts the CFR to explore their research concept by email to contact@thechampfoundation.org. 
  2. The Champ Foundation will set up a call or meeting to discuss the research concept and review the CFR resources and procedures. We provide feedback to the investigator. 
  3. The investigator develops and submits a research proposal (below).
  4. 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.

Research Committee

The Champ Foundation Research Committee will be a minimum of a three-person committee. It may consist of members of The Champ Foundation’s Science Advisory Board, Clinicians at Centers of Excellence, Board of Governors, and/or members of the Pearson syndrome or SLSMD community.

For biospecimens only: The Research Repository Committee will comprise of at least one member from Boston Children’s Hospital.   

Review Criteria

When reviewing a CFR 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.  

  1. Research focuses on issues and concerns that are known or believed to be considered important by people with SLSMD disorders.
  2. Research is scientifically rigorous.
  3. If applicable, new data is feasible to collect (for proposals that involve obtaining additional data not already collected via CFR).
  4. Research has the potential to definitively answer an important question.
  5. The willingness of the investigator to publish and share their findings with the broader scientific community
  6. For biospecimens only: The ability to successfully complete a material transfer agreement (MAT) with Boston Children’s Hospital. Additionally, the type of samples requested and the quantity available may determine whether biospecimens are transferred.

Data sharing policies

The Champ Foundation 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 that is in alignment to our mission of finding treatment and a cure for SLSMD disorders like Pearson syndrome.

Pricing Structure

Pricing for studies using CFR data, samples, and other resources is based on the level of effort associated with the study and can include recovery of costs incurred to create existing resources as well as the projected costs of study-specific efforts. Please contact us for more information including estimates.

Not applicable for biospecimens.