LGL Leukemia Registry Overview
The LGL Leukemia Registry is the only national database and blood and tissue bank of specimens from patients with LGL leukemia. Because LGL is a rare form of leukemia, samples from the registry represent a unique resource for learning more about the disease with the hope of finding better treatments or, one day, a cure. These samples also allow for exploration into the relationship between LGL leukemia and potentially related diseases such as rheumatoid arthritis.
PI: Thomas P. Loughran, Jr., M.D.
IRB-HSR #: 17000
Anyone with known or suspected LGL leukemia can participate in the LGL Leukemia Registry at UVA.
In order to enroll, you will first need to discuss participation with a member of the research team and give informed consent. We are approved to complete this process over the phone.
Please do not send this form to UVA until you have spoken directly with the Clinical Research Coordinator, Bryna Shemo, at 434.243.8431.
Patient & Physician Information
After you have provided informed consent, you will need to submit three forms specific to you and your physician that are kept on file at UVA Cancer Center for reference by Dr. Loughran and the research team. The three forms include:
- Patient Information Form (PDF) - completed by the participant and submitted by fax, email or hardcopy
- Physician Information Form (PDF)*
- Baseline Medical Questionnaire (PDF)*
*The Physician Information Form and Baseline Medical Questionnaire are to be completed by your treating physician and submitted by fax, email or hard copy.
Additional information needed for research includes:
- Physician dictations
- Lab results (CBCs,CMPs, RF or ANA results if applicable)
- Bone marrow biopsy results/Pathology reports
- Flow cytometry results from blood and/or bone marrow
- T-cell gene rearrangement reports from blood and/or bone marrow
- CTs or abdominal ultrasounds
Collection of Samples
We are approved to obtain blood samples from a participant a maximum of six times per year. However, we generally request samples one to two times per year, depending on treatment status and clinical presentation of the participant. The amount to be drawn is 70 milliliters, or about two and a half ounces of blood.
Requests for research samples are coordinated when you already have an appointment for clinical labs, eliminating additional needle sticks and laboratory charges. We can mail a collection kit to either the participant or their treating physician's office. This kit contains the tubes to be drawn and pre-paid return packaging. There is absolutely no cost to the participant for providing samples.
In addition to blood, we may collect a hair snip, cheek swab or saliva sample. Currently we only collect saliva on a routine basis. This collection is achieved by the participant spitting into a tube and is generally only requested once.
If a registry participant is planning to undergo a bone marrow biopsy, liver biopsy or splenectomy as part of their clinical care, we would like to coordinate with the treating physician’s office to obtain any tissue that is leftover or to be discarded.
All samples obtained for the registry are collected and processed by the Loughran research laboratory. Testing is done on a research basis to learn more about LGL Leukemia, what causes it and how to fight it. This testing is not performed on an individualized basis to yield individual results. However, without this important research we would not know as much as we do today about LGL Leukemia and we would not have hopes of knowing even more in the future.
Frequently Asked Questions
Do I need to come to UVA to participate in the Registry?
No. The majority of our participants are never seen at UVA since individuals enroll from all over the United States and around the world. However, we welcome anyone with LGL to contact the LGL clinic coordinator to set up an appointment with Dr. Loughran should they desire a consult. An appointment at UVA Cancer Center is part of clinical care and entirely separate from registry participation.
Does the research blood have to be taken from an appointment with my hematologist?
No. We can coordinate receiving blood from a draw performed at any provider of the participant. However, we like to be copied on the CBC report from any draw if possible to correlate to the sample we are receiving.
Does the timing of the blood draw matter in relation to when I take my medication if I am receiving treatment?
No. There is no need to time a draw for this purpose. However, if a participant who is not currently on medication for the LGL is getting ready to begin treatment we would like to obtain a sample if at all possible before they start.