Our Projects
Sickle Cell Data Collection Project (SCDC)
The Sickle Cell Data Collection (SCDC) program, run by the Center for Disease Control (CDC), collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program helps to inform policy and healthcare standards that improve and extend the lives of people with SCD.
Minnesota is one of 11 states that have been awarded CDC funding to establish a statewide Sickle Cell Data Collection Project.
Sickle Treatment & Outcomes Research in the Midwest (STORM)
STORM is a collaborative effort that implements quality improvement projects and provider education with pediatric and hematology practices to build a functional, sustainable, synergistic network to improve the outcomes and care for patients with sickle cell disease (SCD) in the Midwest.
Blood Donor Diversity Project
In 2021, the American Red Cross launched a national SCD initiative to ensure the availability of donor blood to patients with sickle cell disease when they need it the most - especially in a pandemic!
Through our involvement with the Red Cross Donor Diversity Task Force, SickleCellMN is able to provide community-centered perspectives that impact current and future efforts to increase blood donor diversity and ensure blood availability to i9ndividuals with SCD who need blood transfusions.
SickleCellMN Committees & Workgroups
Sickle Cell Foundation of Minnesota is active in many spaces. These spaces are both directly and indirectly related to our advocacy on behalf of the sickle cell community. Throughout the year there may be opportunities to get involved by joining one of our internal workgroups, however, we also encourage patients, caregivers, family members, and others who are concerned with the outcomes of the sickle cell community to join us in this effort.
Some of our past and current external board, committee, and workgroup involvement includes: (this is not an exhaustive list)
ASH Sickle Cell Treatment Guidelines
Community Health Workers Regional Advisory Council
Midwest Genetics Network Patient Family Advisory Committee
STAR Patient Family Advisory Workgroup
Sickle Cell Treatment Outcomes & Research in the Midwest (STORM) Patient Family Engagement Workgroup
Blood Donor Diversity Advisory Committee
MN Sickle Cell Data Collection Multidisciplinary Team
MN SCD Healthcare Professionals Workgroup
MN Rare Disease Advisory Council
MN Newborn Screening Advisory Council
MNPatient/Family Transfusion Support Workgroup
If you are interested in joining or learning more about internal and external workgroup membership opportunities, please contact us using the button below.
