Date: 2016-02-07
Type of information: Initiation of preclinical development
phase:
Announcement:
Company: Blueprint Medicines (USA - MA) PatientCrossroads (USA - CA)
Product: Mast Cell Connect patient registry
Action mechanism:
Disease: mastocytosis
Therapeutic area: Rare diseases - Hematological diseases
Country:
Trial details:
Latest
news: * On December 1, 2015, Blueprint Medicines and PatientCrossroads, a pioneer in spearheading the adoption of patient-entered disease registries, announced the launch of Mast Cell Connect, a patient registry to advance the understanding of mastocytosis and help speed the development of new therapies. Blueprint Medicines, which is developing a treatment for patients with systemic mastocytosis, is sponsoring the registry. PatientCrossroads\' robust platform will be used to host and manage the registry, including patient privacy, data collection and access. Participation in Mast Cell Connect is voluntary and open to those diagnosed with mastocytosis, a rare disease in which immune cells known as mast cells abnormally build up in the skin, bone marrow and other parts of the body. The registry will include patients with all forms of the disease, including systemic mastocytosis, cutaneous mastocytosis and their subtypes. By participating in Mast Cell Connect, patients will be able to view de-identified perspectives from other patients living with the disease, and may consent to be notified of clinical trials and other research studies. Recruitment efforts for the registry will initially be focused in the United States, but Mast Cell Connect is open to patients from anywhere in the world. In addition to launching Mast Cell Connect, Blueprint Medicines launched a disease awareness website called Together with Systemic Mastocytosis. The goal of this website is to inform, empower and engage patients with systemic mastocytosis and their caregivers.
