Registros

What is a registry?

A registry is a non-interventional tool created for the collection of diagnostic, epidemiological, and treatment data. The term “real-word data” is used to describe a set of data generated or obtained outside the conventional clinical research environment.
Although the validity of the data generated by randomized controlled clinical trials is indisputable, this type of study is conducted in an environment and in a population that does not always represent the population cared for in the daily clinical practice of hematologists. Through this type of study, parameters not studied within regular clinical trials can be captured.

Current ABHH Registries

ABHH currently has the following registries:
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The Brazilian CLL Registries - created in 2004 and with a partnership signed with ABHH in 2019.
The Brazilian AML Registry - created in 2022
The Brazilian Mantle Cell Lymphoma Registry - created in 2024
The Myelodysplastic Syndrome/Neoplasm Registry - created in 2025
The Brazilian Paroxysmal Nocturnal Hemoglobinuria Registry - created in 2026

Data Collection, Management, and Confidentiality

Data collection from ABHH registries is carried out via Electronic Case Report Form (eCRF) and the platform used is RedCap (Research Electronic Data Capture). REDcap is an online platform for data collection and storage created by Vanderbilt University. This system ensures the patient's anonymization, as well as the security and confidentiality of the data, in accordance with local legislation on the use and treatment of personal data (Law n.^O 13,709/2018 - General Personal Data Protection Law - LGPD).
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By participating in any of the ABHH registries, researchers agree to keep all information collected in absolute secrecy and to require similar confidentiality from their team and local Research Ethics Committee. In addition, the confidentiality of the participants will be preserved in all reports during the stages of conducting the studies and after their completion.

Publication

The principal investigators of the studies are responsible for defining co-authors, as well as their order at publication. To define co-authors, those involved in the analysis and writing of abstracts and/or manuscripts will be considered, which will be submitted to scientific and/or periodic meetings, as well as based on the specified number of patients recruited for the study.

Collaborating institutions will be selected for their contribution to the inclusion of research participants in the cohort selected for analysis.

How do I make my institution a participating center?

If you were interested in one (or more) of the ABHH registries and would like to participate with your center, send an email to pesquisa@abhh.org.br stating your interest. We will contact you and send you a copy of the registry protocols with the necessary documentation to include your center in the studies.

I have a registration project. How to partner with ABHH?

The request for support to ABHH for a new registration must be linked to the corresponding scientific committee, which will evaluate the project and prepare a proposal to submit for approval by the general management and board of directors of the ABHH. If approved, the records team will contact you to begin planning and viability. To do this, send an e-mail to verena.pfister@abhh.org.br stating your interest and with the documentation listed below.
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All requests must contain:
1. Copy of the protocol sent to the IRB, containing:
- principal investigator
- title
- study design
- target population and estimated population
- objectives
- outcomes
- registry duration
- eligibility criteria
- publication estimate
- schedule and ethical considerations.
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2. IRB approval;
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3. Funding sources (if necessary, ABHH can help attract sponsorships);
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4. Confidentiality term;
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5. Mapping of the centers that will participate;
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6. Sample Invitation Letter to centers;
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7. CRF

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