Registry for patients with Thrombotic Thrombocytopenic Purpura
German TTP- Registry- Prospective Cohort of Patients With Acquired Thrombotic Thrombocytopenic Purpura (aTTP): Pathophysiology, Diagnosis, Treatment and Follow-Up
This study is creating a registry to track patients with Thrombotic Thrombocytopenic Purpura to see how the disease behaves, what treatments work best, and what might cause flare-ups.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 156 |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Johannes Gutenberg University Mainz Academic / other |
| Locations | 1 site (Mainz) |
| Trial ID | NCT05389007 on ClinicalTrials.gov |
What this trial studies
This observational study aims to create a prospective cohort registry for patients diagnosed with acquired and congenital Thrombotic Thrombocytopenic Purpura (TTP). It will investigate the disease's prevalence, course, treatment success, and potential triggers for relapses while also focusing on identifying predictive markers for morbidity and mortality. The study will collect clinical and laboratory data to enhance understanding of TTP and improve diagnostic and therapeutic approaches. Participants will be followed over time to assess long-term outcomes and therapy responses.
Who should consider this trial
Good fit: Ideal candidates include adults over 18 years old with clinically diagnosed acquired or congenital TTP.
Not a fit: Patients who cannot communicate effectively or do not understand German or English may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved diagnosis and treatment strategies for patients with TTP.
How similar studies have performed: While observational studies on TTP exist, this registry approach may provide novel insights into the disease's management and outcomes.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with clinically diagnosed acquired and congenital TTP regardless of gender, ethnicity, and comorbidities, over the age of 18. * Patients incapable to give consent, who are accompanied by a legal representative during admission to the study, after the written informed consent of the legal representative. * Written informed consent of the patient. Exclusion Criteria: * Patients who are not able to understand the German or English language. * Patients who are permanently unable to communicate and who are not accompanied by a legal representative.
Where this trial is running
Mainz
- University Hospital Mainz, Hematology — Mainz, Germany (Recruiting)
Study contacts
- Principal investigator: Charis v. Auer-Wegener — Universitätsmedizin Mainz
- Study coordinator: Charis v. Auer-Wegener
- Email: charis.von-auer@unimedizin-mainz.de
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.