Mast Cell Connect: A Registry for Patients With Mastocytosis

NCT02620254 | Completed

• 1 other identifier: Mastocytosis Registry
• Study Type: observational
• Target: 743
• Locations: 1 country
• Sites: 1

Brief Summary

The Mast Cell Connect Registry is a voluntary, observational database that will capture demographic, socioeconomic, and disease information directly from patients with mastocytosis via a secure web-based tool. No experimental intervention is involved.

Conditions

Mastocytosis

Keywords

mastocytosis; cutaneous mastocytosis; urticaria pigmentosa; telangiectasia macularis eruptiva perstans (TMEP); diffuse cutaneous mastocytosis; solitary cutaneous mastocytosis; systemic mastocytosis; indolent systemic mastocytosis; smoldering systemic mastocytosis; aggressive systemic mastocytosis; systemic mastocytosis with associated clonal hematologic non-mast cell lineage disease; mast cell leukemia

Outcome Measures

Primary Outcomes (1)

• Further the understanding of the epidemiology of mastocytosis and its subtypes

  Through completion of the study

Other Outcomes (2)

• Improve the collective understanding of the natural history of mastocytosis and its impact on patients

  Through completion of the study

• Assist in the development of mastocytosis therapy by increasing participation in clinical trials and other research studies for patients with mastocytosis

  Through completion of the study

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with a diagnosis of mastocytosis, including systemic mastocytosis and cutaneous mastocytosis and any subtypes of these diseases.

You may qualify if:

• Any patient with a diagnosis of mastocytosis, including systemic mastocytosis and cutaneous mastocytosis and any subtypes of these diseases, who is willing and able to provide written online informed consent

You may not qualify if:

• None

Sponsors & Collaborators

• Blueprint Medicines Corporation: lead
• PatientCrossroads: collaborator

Study Sites (1)

Registry participation is worldwide and not limited to this facility

Cambridge, Massachusetts, United States

Location

Related Links

• Related Info

MeSH Terms

Conditions

Mastocytosis; Mastocytosis, Cutaneous; Urticaria Pigmentosa; Telangiectasia macularis eruptiva perstans; Mastocytosis, Systemic; Leukemia, Mast-Cell

Condition Hierarchy (Ancestors)

Neoplasms, Connective Tissue; Neoplasms, Connective and Soft Tissue; Neoplasms by Histologic Type; Neoplasms; Mast Cell Activation Disorders; Immune System Diseases; Skin Neoplasms; Neoplasms by Site; Skin Diseases; Skin and Connective Tissue Diseases; Pigmentation Disorders; Leukemia; Leukemia, Myeloid, Acute; Leukemia, Myeloid; Hematologic Diseases; Hemic and Lymphatic Diseases

Study Officials

• Anthony L Boral, MD, PhD

  Blueprint Medicines Corporation

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 5 Years
• Sponsor Type: INDUSTRY
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 19, 2015
• First Posted: December 2, 2015
• Study Start: November 1, 2015
• Primary Completion: January 1, 2021
• Study Completion: January 1, 2021
• Last Updated: February 4, 2021

Record last verified: 2021-02

Locations

US (1)