Purpose of the Bill

This bill aims to establish a comprehensive program for the collection and research of endometriosis data. The initiative, to be administered by the University of Minnesota, intends to support the early detection and treatment of endometriosis by creating a data and biorepository program.

Main Provisions

• University of Minnesota Initiative: The bill requests the University of Minnesota's Board of Regents to establish and manage a data and biorepository program focusing on endometriosis.

• Research Support: The program will foster research to enhance early detection, develop therapeutic strategies, and improve clinical management for endometriosis.

• Biorepository Development: A facility will be set up to collect, catalog, and store human biological samples such as urine, blood, tissue, and DNA. These samples will be coded to remove personal identifiers but linked to phenotypic data like age, sex, race, and disease history.

• Data Collection and Usage: The program will gather specimens and information from both affected individuals and control subjects to explore the cellular and phenotypic characteristics of the disease. This also includes regular collection of clinical and demographic data.

• Statewide Collaboration: The initiative encourages collaboration among research institutions and promotes the sharing of data and resources across the state.

• Targeted Outreach: The program aims to represent all affected groups including underrepresented communities. It will also raise awareness about endometriosis among healthcare providers and impacted populations.

• Education and Awareness: The program serves as a hub for endometriosis information and organizes educational initiatives such as conferences and medical education to improve diagnosis and treatment practices.

• Impact and Funding: The University is tasked with measuring the impact of endometriosis on residents and is authorized to seek funding through grants and donations.

Significant Changes

• Data Classification: Information collected through this program will be classified as private, aligning with state data privacy laws.
• Reporting Requirement: Starting January 2026, and every two years after, the University of Minnesota’s Board of Regents must report on the program's progress to state legislative committees.

Relevant Terms

• Endometriosis
• Biorepository
• Early Detection
• Therapeutic Strategies
• Phenotypic Data
• Underrepresented Communities
• Data Privacy