Data Collection

Global Database on Childhood Cancer Patients Infected with Human Immunodeficiency Virus (HIV).

There is a pressing need for a large international database on childhood and adolescent cancer patients who are also infected with the Human Immunodeficiency Virus (HIV). I believe that existing data is too fragmented and scattered to be readily useful for some types of research.

The data for this proposed database would be obtained from hospitals and research facilities, not just from this country, but from other countries as well. Data would be collected on individual parameters such as age, sex, race and ethnicity. Genetic patient data would also be included. Data on cancer type and HIV sub-type would be included along with diagnosis, treatment and treatment outcomes for both cancer and HIV. Other types of data and other relevant information could also be collected.

This database would be large enough to mine for data, establish patient cohorts and provide information on knowledge gaps. It could be continually expanded to accommodate new data. The database should be easily addressable by computer and be user friendly.

A data collection like this might be valuable in addressing epidemiological questions concerning cancer type and frequency among HIV infected children and adolescents both for AIDS defining and non-AIDS defining cancers. Epidemiological data on HIV sub-types for these patients could also be addressed.

Information from this database could also be used in making risk assessments for infected individuals with cancer and used in formulating decisions concerning best treatment options.

Finally, genetic data would be particularly valuable for further research.

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Idea No. 967