Tuesday, February 23, 2010

Invitation to Participate in TCCC Histiocytosis Research Program


The Histio Heroes Research Fund is very proud and excited to announce an opportunity for histiocytosis patients to play a direct and important role in advancing the ground-breaking research that Dr. Ken McClain and Dr. Carl Allen are performing through the Histiocytosis Research Program at Texas Children's Cancer Center.

What does this research involve?

The TCCC Histiocytosis Research Program is dedicated to studying Histiocytic Diseases in order to identify the causes and discover cures. If you or your child are undergoing procedures (surgical biopsy, blood draw, lumbar puncture) for clinical purposes related to the diagnosis or treatment of histiocytosis, you are invited to participate in Histiocytosis Research Program.

This research requires tissue samples from patients with Histiocytic Diseases, including Langerhans Cell Histiocytosis (also called Eosinophilic Granuloma), Juvenile Xanthogranuloma, Rosai-Dorfman Disease, Erdheim-Chester Disease, Hemophagocytic Lymphohistiocytosis, and Malignant Histiocytosis. These tissue samples provide vital information that will assist the Histiocytosis Research Program team in understanding the basic causes of histiocytosis, which hopefully will lead to more effective treatments.

What is needed for this research?

Surgical biopsies. The current research is focusing on an effort to isolate pure populations of cells fresh or frozen biopsy specimens to discover which specific genes are causing Langerhans Cell Histiocytosis and related diseases.

Blood samples. White blood cells can be isolated and analyzed in order to determine which circulating cells and genes contribute to Histiocytic Diseases. The plasma fluid in blood can also be analyzed to determine which proteins are important in diagnosing and treating Histiocytic Diseases.

Cerebrospinal fluid. CSF is the fluid that surrounds the brain and spinal cord. The Histiocytosis Research Program is studying proteins that are involved in Histiocytosis-related nerve problems.

Medical information. Medical details associated with the biology samples will help determine the clinical significance the genes, proteins and cells identified in the Histiocytosis research studies.

How can I participate in this research?

If you are interested in participating in the Histiocytosis Research Program, you are invited to contact Dr. McClain or Dr. Allen so that they can send you information and a consent form for this study that is approved by the Institutional Review Board for Baylor College of Medicine and Affiliated Institutions.

Dr. McClain, Dr. Allen or a staff member will then contact you by phone to discuss the consent form. If you are interested in participating after that conversation, you can then sign and return the consent form by FAX, mail, e-mail or FedEx (a prepaid FedEx airbill can be provided).

After answering your questions and receiving a signed consent form, the Histiocytosis Research Program team can discuss specific instructions for collection and shipping of tissue samples with you and your doctors.

Please contact us if you are interested or if you and/or your physicians have other questions about the Histiocytosis Research Program.

Kenneth McClain M.D., Ph.D. (klmcclai@txccc.org)
(832) 822-4208

Carl Allen M.D., Ph.D. (ceallen@txccc.org)
(832) 824-4312

Mailing address:

TXCCC Histiocytosis Lab
Texas Children's Hospital/Feigin Center
Rm C1070.01L
1102 Bates Street
Houston, Texas 77030

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