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The Tissue Core of this consortium provides the necessary infrastructure for all the projects to achieve their potential and expedite their findings.

Familial CLL

The Tissue Core will collect, process, and validate specimens from affected Family Members with CLL for targeted genetic studies.

Familial CLL Background

Genetics factors contribute to the development of CLL. Although CLL is the most common adult leukemia in Western societies, it is relatively rare in Japan.   A very low incidence of CLL is noted even among Japanese immigrants to the United States. Although most cases of CLL are sporadic, multiple cases of CLL may be found within a single family.  Moreover, there are numerous reports of families with multiple members having CLL. First-degree relatives of patients with CLL are more than three times at risk for having this disorder than is the general population. Afflicted individuals within such families often present at a younger age than most patients with CLL, suggesting that genetic factors in familial CLL contribute to early leukemogenesis. However, the genetic factor(s) that contribute to familial CLL is unknown. The CRC provides a unique opportunity for facilitating discovery of the genetic basis for CLL. Since its inception, the CRC has accrued blood and tissue samples from over two thousand patients with CLL. Review of the CRC Tissue Bank clinical data reveals that about 8% of accrued cases are from patients who have family members with CLL.

CRC Tissue Core Familial CLL studies SOPs

About 8% of the patients who have submitted samples to the Tissue Core are registered to have at least one immediate family member who also has this disease. The CRC Tissue Core has acquired cell samples, buccal swabs, and clinical data from related family members who share the disease, including a set of monozygotic twins who are concordant for CLL. All information from CLL patients with Familial CLL(demographic & clinical, and from the questionnaire) is captured via the CRC database system. We have also have created a packet which includes a consent form, a CRC questionnaire, and instructions on how these individuals can send the tissue samples to the Tissue Core.

This effort will identify affected family members, advise of the opportunity to contribute tissue samples, these samples will be used for the genetics studies conducted by the CRC investigators.

Sample and Data Collection SOP

Research nurses at each of clinical CRC sites identify subjects who have a family history of CLL. Research nurses contact patients with a history of familial CLL and obtain contact information for affected family members. The nurses explain the purpose and nature of the study and describe the nature of our required informed consent to affected family members. Adults who consent to the study over the phone will be mailed a questionnaire and a copy of our informed consent form for acquisition of clinical data and blood and buccal mucosa tissue samples. Upon receipt of the signed informed consent, the research nurses will contact the affected individual and arrange the logistics for having blood and tissue samples collected, either via a contract service or through an arranged visit with the person’s local physician. For the latter, the local physician or physician assistant would be contacted to arrange for proper collection of blood and tissue samples, which then would be mailed to the central CRC Tissue Core. Clinical data will be reviewed with the patient and, if appropriate, the patient’s physician. These clinical data will be submitted to the CRC database . All patient samples will be processed and identified according to previously the described SOPs of the Tissue Core In addition, these Familial CLL samples will have a unique identification to identify the if they are first, second, or third degree relatives via the CRC Biomendical informatics.

Click below to download the following Familial CLL resources:

Familial CLL Studies Patient Participation Letter
General Information for Familial Studies Participants
Familial History Questionnaire


Calin GA, Trapasso F, Shimizu M, Dumitru CD, Yendamuri S, Godwin AK , Ferracin M, Bernardi G, Chatterjee D, Baldassarre G, Rattan S, Alder H, Mabuchi G, Shiraishi T, Hansen LL, Overgaard J, Herlea V, Mauro FR, Dighiero G, Movsas B, Rassenti L, Kipps T, Baffa R, Fusco A, Mori M, Russo G, Liu C-G, Neuberg D, Bullrich F, Negrini M, Croce C (2005) Familial Cancer Associated with a Polymorphism in ARLTS1 NEJM:352:16:1667-1676.

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