Lymphatic Anomalies Registry Frequently asked questions (FAQs)

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Contact the Lymphatic Anomalies Registry

What conditions will be included in the registry?
What data are you collecting for the registry?
Will my identity and medical information be kept secure?
Are there costs, requirements or risks associated with participation?
How do I participate?
Is this the same as the International LGDA Patient Registry?
I already participate in a registry. Can I participate in this one as well?
Do I need to be a patient at Boston Children's Hospital in order to participate?
What age do I need to be to participate?
Who is operating the registry?

What conditions will be included in the registry?

There are many names used to describe lymphatic anomalies, and sometimes the same condition may have multiple names. Other conditions have significant overlap and learning about one may teach us about another. For this reason, we are interested in collecting data from patients with a broad assortment of lymphatic conditions.

Eligible conditions include, but are not limited to:

  • Gorham-Stout disease
  • generalized lymphatic anomaly (GLA) or lymphangiomatosis
  • CLOVES
  • Klippel-Trenaunay or capillary lymphaticovenous malformation
  • blue rubber bleb nevus syndrome (BRBNS) or venolymphatic malformations
  • microcystic and/or macrocystic lymphatic malformations
  • kaposiform hemangioendothelioma
  • kaposiform lymphangiomatosis
  • central conducting lymphatic anomalies
  • congenital chylothorax
  • chylous effusions/ascites

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What data are you collecting for the registry?

Data in the Lymphatic Anomalies Registry will include medical records and patient/parent interviews. All data will be entered and reviewed by a research team within Boston Children's Vascular Anomalies Center (VAC) to ensure that the registry contains quality data and accurate information.

If submitted, an expert pathologist will review biopsies and resected tissue, and an expert radiologist will review imaging studies to verify the diagnosis and validate registry data.

We strongly believe that this effort to validate data before entry is critical to the quality of analyses we will perform and the knowledge we gain about these diseases.

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Will my identity and medical information be kept secure?

We will safeguard participants' privacy by keeping all identifiable information separate from the clinical data housed in the registry. Participants' medical information will be secured in a HIPAA-compliant database, with access restricted to members of the VAC research team.

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Are there costs, requirements or risks associated with participation?

There is no cost to participate in the registry. You will have to submit a signed consent form in order to register. Participation is entirely voluntary and will not impact your care at Boston Children’s Hospital or any other center in any way. Participants do not need to travel to Boston to participate. The only risks of participation are discomfort answering questions or accidental disclosure of protected medical information.

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How do I participate?

Patients cannot register directly on this site because we cannot guarantee the security of private information provided through this site. To inquire about participating and learn more about the registry, click here to submit your contact information. A member of the study team will contact you within one week.

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Is this the same as the International LGDA Patient Registry?

No, this is not the same registry. These are distinct projects with different goals, though including many of the same patients. We strongly encourage participation in both registry projects and believe each are important to further our understanding of rare lymphatic conditions. More information about the international LGDA Patient Registry can be found here.

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If I already participate in a registry, can I participate in this one as well?

Some centers may already have established other database or registry projects for specific lymphatic anomalies. We encourage you to participate in more than one project. Over time, many of these projects may combine and until then, each study is a new opportunity to learn more about this rare disease state.

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Do I need to be a patient at Boston Children's Hospital in order to participate?

No. In fact, we encourage patients seen at other vascular anomalies centers to participate, so we can gather the most comprehensive and representative data. In addition, we plan to have some centers directly enter patient data into the Lymphatic Anomalies Registry in 2014. Eligible sites can apply if they see a large number of eligible patients and have the expertise in diagnosis and management, imaging and pathology and the necessary research infrastructure.  Please contact us if you are interested in learning more about applying to enroll patients directly from your center.

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What age do I need to be to participate?

Patients of any age—adults and children—can participate in the registry.

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Who is operating the registry?

The Lymphatic Anomalies Registry's research team is led by Cameron Trenor III, MD, a hematologist/oncologist and director of clinical research for the VAC, and Meghan O'Hare, C-PNP, a research nurse practitioner in the VAC.  The Registry is also supported by two clinical research assistants, a graduate student, a database manager and a statistician.

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