CLOVES Syndrome Community seeks the highest level of ethical conduct in engagement with biopharmaceutical companies. The goal of engaging with biopharmaceutical companies is to help enable the development of therapies while maintaining our autonomy.
Guidelines for Interactions Between CLOVES Syndrome Community and Biopharmaceutical Companies
The interactions between CLOVES Syndrome Community (“CSC”) and biopharmaceutical companies are important and complex. Collaborations between these two stakeholders have become more common in recent years as CLOVES Syndrome Community has evolved and biopharmaceutical industry activity has increased, particularly in rare diseases.
The principles outlined in the following guidelines are intended to help CLOVES Syndrome Community navigate critically important interactions with biopharmaceutical companies.
These guidelines were developed with input from an Independent Expert Panel from the rare disease community with expertise in these collaborations from both the industry and patient advocacy organization point of view. More information on the Independent Expert Panel and the process for developing these Guidelines is provided in the article entitled “Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases,” published in The Orphanet Journal of Rare Diseases, 2018.
CLOVES Syndrome Community seeks the highest level of ethical conduct in engagement with biopharmaceutical companies. The goal of engaging with biopharmaceutical companies is to help enable the development of therapies while maintaining our autonomy. All interactions between CLOVES Syndrome Community, industry and the disease community should be transparent; should enable trust, accountability and shared learning; and ultimately should work most efficiently and effectively toward advancing meaningful treatments for patients.
There are four main areas of engagement between CLOVES Syndrome Community and biopharmaceutical companies described in the following Guidelines:
- Identification and Engagement with Companies
- Patient Engagement and Patient Privacy
- Financial Contributions
- Clinical Trial Communication and Support