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Our clinical research

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Our clinical research

Our clinical research

The purpose of this page is to inform you about the clinical research conducted at the Leukemia Institute, to describe how health data and biological samples are used, and to remind participants of their rights regarding the use of their personal health data for research purposes.

Below, we also provide information about clinical research conducted by the Leukemia Institute in collaboration with AP-HP Saint-Louis Hospital, Robert Debré Hospital, Necker Hospital, Cochin Hospital, Inserm, and other partners.

eTHEMA Registry

eTHEMA Registry

The eTHEMA registry, supported by the French National Research Agency as part of the government’s Future Investment Plan, collects research data on leukemia and related diseases to continually help physicians, biologists, and research technicians at three AP-HP hospitals (Saint-Louis, Robert Debré, and Avicenne) understand and manage these diseases.

The data recorded in the eTHEMA CRF reflect the source data collected prospectively in hospital records or lab results. At the same time, data from routine biological samples (blood, bone marrow) or research samples collected and frozen at the certified SLS/THEMA Biological Resource Center will be located in the MEARY translational research building near the eTHEMA data center, under the responsibility of Professor Emmanuelle Clappier (Biological Hematology Laboratory, Saint-Louis Hospital, Paris).

Transparency portal, reuse of health data, and individual rights

For the purpose of clinical research conducted by or supported by the Leukemia Institute, each patient involved has signed a consent form or received an information letter. This document specifies that the health data collected during the study may be reused for other scientific research to improve medical and therapeutic knowledge about the disease being studied.

For each clinical study, participant information is compiled in a database after being pseudonymized. This data does not directly identify individuals, as it does not include first or last names or contact information. Only the research team has the list that links the assigned code to the person’s identity.

Our biological collections

The Leukemia Institute contributes in the Biobank Observatory for Translational Research in Hematology (BiRTH) and the RIME Observatory (National Observatory for Bone Marrow Failure), which aim to collect standardized (clinical and biological data) and anonymous information for each patient on a prospective and retrospective basis.

View Transparency Portal

Reuse of biological samples and associated data for scientific research purposes

Biological samples collected during care or clinical leukemia research may be stored in a biological collection, along with certain health data, for the purposes of scientific studies, reviews, and research.
During a consultation or hospital stay, biological samples may be taken for biological, genetic, or other analyses for diagnostic, monitoring, or treatment purposes. These samples may include various types of specimens (blood, urine, saliva, skin, stool, tissue, etc.).
If some of the samples collected have not been used for the analyses initially planned, patients and, if necessary, their parents, may be asked to give their consent for the remaining samples to be stored in a biological collection. This enables research through scientific or clinical programs focusing on genetic diseases and, more broadly, rare diseases. Related clinical data (such as sociodemographic information, the diagnosis, symptoms, treatments administered, and test results) will also be stored with these samples for the purpose of conducting this research.

In this context, patients will have signed a consent form or received an information document specifying:

  • The type of samples stored, the objectives of the scientific research, the storage conditions, and the related treatment data.
  • The regulations applicable to the processing of personal data, in particular the process to code samples and data to guarantee the anonymity of the individuals concerned.
  • Patients’ rights to access, correct, and delete their data, restrict or object to its processing, and regarding the portability of their data, in accordance with the General Data Protection Regulation (GDPR) and the French Data Protection Act, as well as the contact details of the persons to contact to exercise these rights.