Letter from Toronto Sick Children's Hospital re: CIMFR

Dear Sir/Madam,
With the support of heads of the various Pediatric Hematology/Oncology Programs throughout Canada, I have recently initiated the establishment of a new collaborative Canadian Inherited Marrow Failure Registry (CIMFR). We propose to register all patients with inherited bone marrow failure syndromes who are currently followed at various centers in Canada and those who are diagnosed each year. The various inherited bone marrow failure syndromes (e.g Shwachman-Diamond syndrome, Fanconi's anemia, Kostmann's disease etc.) are individually relatively rare. However, when combined together they probably constitute an important portion of pediatric hematology. The dimension of the problem has never been prospectively studied in Canada or elsewhere. From the national registries of Fanconi's anemia, however, we know that the incidence, the genotype and the phenotype of certain diseases can vary among different countries.
The objectives of the registry are:

1. To determine the prevalence of the various I inherited bone marrow failure syndromes in Canada
2. To accurately characterize the phenotype of the various inherited bone marrow failure syndromes in Canada
3. To determine the age specific and annual incidence of myelodysplasia/acute leukemia/solid tumors in the patients and first degree relatives
4. To identify risk factors for the development of myelodysplasia/acute leukemia/solid tumors
5. To provide molecular diagnosis in cases where the genetic defect is known and to correlate between the genotype and the phenotype.
6. To create a blood and marrow sample bank for future studies relevant to understanding and treatment of these disorders.

As of October 15, 2001 heads of 14 of the 16 pediatric hematology/oncology programs throughout Canada have agreed to participate. A full reaserch proposal with registration forms and consent forms has alredy been
submitted to the Research Ethics Board at the Hospital for Sick Children, Toronto, and was approved. The study is now in the process of being approved by the various institutional Ethics Board in Canada.

I believe that such as a registry will create a new, important collaborative panel focused on these disorders at the national level. This will further our understanding of these syndromes, promote research and establish standards of care. Any of the families with a child with an Inherited marrow failure syndorme who come to our Marrow Failure Clinic at the the Division of Hematology/Oncology, The Hospital for Sick Children are currently asked for their consent to be recruited to the registry, to have their data anonimously coded into the data base, and for storage of a small amount of blood and bone marrow for future studies when these tests are being done for the standard care fo the patients.

Sincerely,
Yigal Dror M.D.,
Staff, Pediatric Hematologist/Oncologist,
Division of Hematology/Oncology and Bone Marrow Transplantation,
Clinician Scientist Track, Research Institute,
The Hospital for Sick Children, The University of Toronto
555 University Avenue, 9th floor, University Wing
Toronto, Ontario, Canada M5G 1X8
Phone: (416) 813-5630
Fax: (416) 813-5327
E-mail: yigal.dror@sickkids.ca

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