Severe Immune Cytopenia Registry Www.Sic-reg.Org

NCT ID: NCT03576742

Last Updated: 2025-11-21

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

80 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-03-09

Study Completion Date

2024-12-31

Brief Summary

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Prospective registry study for children and young adults with severe immune cytopenias (persisting/chronic immune thrombocytopenia, autoimmune hemolytic anemia, and Evans syndrome) to improve the management, facilitate the differential diagnostic work-up, and document the clinical course under various treatments.

Time points: at inclusion, after 6 months, after 12 months, then yearly up to 4 years after inclusion.

No intervention, mere observation and documentation. Guided pre-inclusion (differential) diagnostic work-up.

Detailed Description

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The study aims to improve the management and care of patients with severe immune cytopenias, to identify underlying causes of severe immune cytopenias and to develop a strategy for early treatment stratification based on a standardized diagnostic algorithm, potentially supported by biomarker analyses and (off study) genetic analyses, where clinically indicated.

Primary Goal:

Rapid detection of underlying causes of severe immune cytopenias with the aid of a structured diagnostic approach and access to a clinical care network of the participating centers, allowing early treatment stratification

Secondary Goals:

* Collection of data about epidemiology of rare diseases
* Systemic documentation of response rates to various treatments
* Identification of biomarkers and modifiers of immune tolerance
* Collection of data about the usage of novel/experimental therapeutic agents
* Documentation of physician-reported outcome measures/performance scores
* Consultation of the caring physicians through a regular SIC-Reg board

There will be no additional venous punctures or investigational time points. At clinical visits around planned study time points, additional blood parameters and stool specimen will be obtained. The current clinical management follows international guidelines, which are summarized in the study documents but do not represent part of the study (no diagnostic or therapeutic investigational arm).

Conditions

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Immune Thrombocytopenia Autoimmune Hemolytic Anemia Evans Syndrome Primary Immunodeficiency

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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patients

all who fulfil inclusion criteria and consent to participation; potential biomarkers will be documented

potential biomarkers

Intervention Type DIAGNOSTIC_TEST

facs analysis, microbiome analysis

Interventions

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potential biomarkers

facs analysis, microbiome analysis

Intervention Type DIAGNOSTIC_TEST

Eligibility Criteria

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Inclusion Criteria

* Autoimmune hemolytic anemia (AIHA)
* Evans syndrome (ES)
* Persistent or chronic immune thrombocytopenia (ITP; \>6 months after first manifestation)

Exclusion Criteria

* (history of) malignancies
* (history of) hematopoietic stem cell transplantation
Minimum Eligible Age

6 Months

Maximum Eligible Age

25 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Medical University of Graz

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Seidel

Role: PRINCIPAL_INVESTIGATOR

Medical University of Graz

Locations

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Pediatric Hematology-Oncology Outpatient Clinic

Graz, Styria, Austria

Site Status

Countries

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Austria

Other Identifiers

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30-155 ex 17/18

Identifier Type: -

Identifier Source: org_study_id

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