Genetic and immunological variability in Autoimmune lymphoproliferative Syndrome. A Patient Register.

Genetic and immunological variability in Autoimmune lymphoproliferative Syndrome. A Patient Register. - ALPS

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00000298

Enrollment

Registered

2010-01-15

Start date

2009-02-16

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Autoimmune lymphoproliferative syndrome (ALPS)

Interventions

Group 1: Clinical data sheet and lab data/genetic ananlysis in ALPS cohort

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: The following inclusion criteria are applied for patient selection: 1. Chronic benign lymphoproliferation (i.e. splenomegaly +/- lymphadenopathy > 3 months, > 0.5 cm, at 2 sites without infectious or malignant cause) and autoimmune cytopenia in >= 1 lineage or: 2. Patients without lymphoproliferation but with autoimmune cytopenia in >= 2 lineages (Evan' s Syndrome)

Exclusion criteria

Exclusion criteria: No written informed consent of patient or parents (in case of minors) has been obtained

Design outcomes

Primary

Measure	Time frame
Probability of diagnosis	—

Secondary

Measure	Time frame
1. Establish a register for patients with lymphoproliferation and autoimmune cytopenia 2. Define phenotypic clusters on the basis of a detailed standardized clinical, immunological and genetic analysis 3. Study immunological consequences of mutations associated with ALPS 4. Identify novel genetic causes for lymphoproliferation and autoimmune cytopenia	—

Countries

Germany, United Kingdom

Contacts

Public ContactCarsten Speckmann

Centrum für Chronische Immmundefizienz Universitätsklinikum Freiburg

carsten.speckmann@uniklinik-freiburg.de+49 761 270-43010

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026