Development of Medical Guidelines

Care Beyond Diagnosis has recognized an opportunity within the rare disease community to develop internationally recognized medical guidelines for rare diseases.

Clinical Guidelines are developed through consensus of “experts” in a specific area of focus. Experts are professionals whom have been selected and accepted the role as a panelist in the consensus program. 

While some of the rare diseases recognized today have a set of management guidelines, the majority of the guidelines are limited in their ability to improve access, given the lack of transparency in their development or their perceived/stated bias.

It is our goal to establish Care Beyond Diagnosis as the premier developers of Medical Guidelines in an effort to strengthen the reimbursement and dissemination of the published guidelines.

Clinical Guidelines require a rigorous development process in order to authenticate the recommendations within. CBD will adhere to the criteria set forth by an independent agency which assesses the completed guidelines in order to proactively implement the required practical tasks and processes involved.

While the costs of generating a rigorous development program have traditionally been high, CBD has worked to manage these costs by utilizing virtual platforms for consensus building and for the Modified Delphi validation phase.

The goal of our guideline development is to publish the manuscript of course, but to also have the entire program scored against the AGREEII Assessment tool (https://www.agreetrust.org/agree-ii/) to validate the impartiality of the project and the validity of the clinical care statements.