Lymphatic Anomalies Registry



Status:Recruiting
Conditions:Skin Cancer, Lymphoma, Women's Studies, Hematology
Therapuetic Areas:Hematology, Oncology, Reproductive
Healthy:No
Age Range:Any
Updated:11/11/2018
Start Date:June 2013
End Date:June 2025
Contact:Parker Greiwe, BS
Email:Lymphaticregistry@childrens.harvard.edu
Phone:617-355-6863

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Lymphatic anomalies are a rare subset of vascular anomalies that are poorly understood. the
understanding of the natural history, long-term outcomes, risk factors for morbidity and
mortality, and the relative benefit of medical therapies and procedures is limited.The goal
of this project is to better understand these diseases and improve the care of theses rare
patients. To do this, the investigators are conducting an observational study of patients
with lymphatic anomalies, including an annual follow-up questionnaire to gather prospective
data on mortality, morbidity, treatments, and functionality as well as quality of life.

The purpose of the Lymphatic Anomalies Registry, created at Boston Children's Hospital, is to
create a database to help current and future patients diagnosed with a lymphatic anomaly. The
ultimate goal of the registry is to better understand and predict responses to therapies and
risk factors for complications. Although the Lymphatic Anomalies Registry exists at Boston
Children's Hospital, patients can be entered into the registry regardless of whether or not
they visit Boston Children's Hospital, thus increasing the program's accessibility. The
Lymphatic Anomalies Registry includes patients who have vascular anomalies with a lymphatic
component across various diagnoses. From the patient's perspective, participation in the
Lymphatic Anomalies Registry means taking part in a short, thirty minute interview, and
providing the registry with access to medical records. The interview is conducted verbally
with study staff of the Lymphatic Anomalies Registry, and can take place either at the
hospital, or over the phone. During the interview, the registry will inquire about the
patient's diagnosis, disease features, medical therapies, and procedures. Interested
prospective patients will receive an introductory packet from the registry with information
on how to proceed in the registry process. All obtained patient information is housed on a
secure, HIPPA compliant, internal database, managed by Boston Children's Hospital staff.
Patient information entered into the external database is de-identified. The research teams
will also obtain a medical record release form to request the patient's medical record for
review in our study.

Inclusion Criteria:

- Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with
significant lymphatic component
We found this trial at
1
site
300 Longwood Ave
Boston, Massachusetts 02115
(617) 355-6000
Principal Investigator: Denise Adams, M.D.
Phone: 617-355-5226
Boston Children's Hospital Boston Children's Hospital is a 395-bed comprehensive center for pediatric health care....
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