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Chapter 10: Unrelated Donor HSCT 201 To determine the experience of a transplant center being considered, the physician or patient should ask the questions listed in Table 3. Referring doctors and insurance companies may have associations with transplant centers, often based on experience with patients with leukemia. Proximity to home is a factor that may not be appropriate for the patient with FA, if specific FA expertise is not locally available. Patients and families should note that they or their advocate can often negotiate with the insurance company concerning where a transplant is performed. A transplant center’s experience in FA and the use of alternative donors can change an insurer’s preference and allow the development of individual contracts, even when the transplant center is “out of network” or not considered one of the insurer’s “Centers of Excellence.” Note: “Center of Excellence” is the designation for a center with an existing negotiated contract and is not related to a center’s expertise. As a rule, a family should not accept a denial from an insurance carrier without asking a transplant center expert in FA transplants to negotiate with the carrier. Assessment An evaluation at an FA transplant center will address the following elements (Table 4). Past medical history FA is a genetically and phenotypically heterogeneous disorder, often accompanied by multiple congenital malformations, growth failure, learning disabilities, etc. Congenital malformations may range from none to many and may involve any of the major organ systems.
202 <strong>Fanconi</strong> <strong>Anemia</strong>: Guidelines for Diagnosis and Management Table 4: Required Elements of the History to be Prepared Prior to Going to the Transplant Center • Reason for FA testing. • Date of diagnosis. • Results of DEB and MMC tests, including evidence of somatic mosaicism (i.e., presence of DEB/MMC-resistant cells). • Results of complementation group or mutation analysis (including BRCA2 testing for those with early onset of leukemia [age
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Chapter 4 Gastrointestinal, Hepatic
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Chapter 7 Endocrine Disorders in Fa
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Chapter 14 The Adult Fanconi Anemia
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guidebook. - Fanconi Anemia Research Fund

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