Ash Registry Inc.

“The form 990 was prepared by the outside accountants and reviewed first by the chief financial officer, and then by the executive director. It was then sent to the entire board prior to filing with the irs.”

“Ash rc's conflict of interest policy questionnaire is filled out electronically by all board members and officers. Before each board or committee meeting a member is put in charge of reviewing all conflict of interest statements for the members attending. Furthermore, members are asked to disclose any changes before every meeting. When an ash rc member has a conflict, s/he will not: 1. Take any action on behalf of ash concerning the subject in conflict or any issue relevant to the subject in conflict; 2. Participate in discussions on the subject without full disclosure; 3. Participate in decision-making discussions or cast a vote; 4. Imply that he/she is acting on behalf of ash rc when discussing the relevant subject with third parties; or 5. Fail to clarify with third parties with whom he/she deals on the relevant subject that he/she is not acting on behalf of ash rc.”

“Ash rc relies on a related organization, ash, to determine compensation. As part of the process for determining the compensation for all of its employees, the compensation for key employees of the organization (including the executive director of ash rc) is reviewed by an outside hr group and approved by the executive director of ash.”

“The organization's governing documents and financial statements are available upon request. The conflict of interest policy is located on the organization's website.”

“The ash rc is currently focused in two disease areas: one classical hematologic condition, sickle cell disease (scd), and one malignant hematologic disease, multiple myeloma (mm). At the heart of both programs are site-based research networks consisting of experts in their respective fields. The scd research network fosters collaborative partnerships to accelerate progress in clinical research and improve outcomes for individuals living with scd by expediting the development of therapeutics and generating high-quality evidence to support clinical decision-making. Learn about the scd research network. The mm research network is committed to building relationships within the myeloma community, leveraging the power of real-world evidence, and prioritizing research to improve the lives of individuals living with multiple myeloma. Learn about the mm research network. Both networks are powered by real-world data (rwd) which we call the data hub. The data hub is designed to be the largest shared information resource with real-world data to serve the hematology community. Access to these data can accelerate research and development, support regulatory decision-making, and help clinics identify opportunities for quality improvement.”

“Consultants: program service expenses 3,504,423. Management and general expenses 5,470. Fundraising expenses 0. Total expenses 3,509,893. Other professional fees: program service expenses 460,833. Management and general expenses 1,860. Fundraising expenses 0. Total expenses 462,693.”

“The process has not changed from prior year.”