Hemoglobinopathies Long-Term Follow-Up Project

Project Lead: Kathryn Hassell, MD

Project Summary

The goal of this project is to expand long-term follow-up of and improve the medical home for individuals with hemoglobinopathies. During the first year, this project will identify sites of health care for people with hemoglobinopathies, exploring strategies for surveillance and long-term follow-up; assess support needed to serve individuals with hemoglobinopathies, and dissemination of information; establish a centralized resource on the MSGRC website, with information regarding medical homes, links to state DOH and other resource/educational websites; and provide a point of contact to reach hemoglobinopathies experts for questions/referrals.