ClinicalTrials.gov record NCT05914441

Spanish-Portuguese Thrombotic Thrombocytopenic Purpura Registry

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Jul 27, 2026

Development Of Spanish-Portuguese Thrombotic Thrombocytopenic Purpura Registry (REPTT): A Study Proposal Of The Spanish Society Of Hematology And Hemotherapy (SEHH) Whit The Portuguese Society Of Hematology (SPH)

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.The registry record was last updated on May 29, 2024, about 2 years ago, so the status shown may be out of date. The study team or the registry can confirm.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
AgeUp to 99 years old
SexAll
LocationSpain
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

REPTT is a prospective, non‑interventional registry collecting real‑world data on people diagnosed with thrombotic thrombocytopenic purpura (TTP) in Spain and Portugal. The study plans to enroll at least 300 patients and follow them under usual clinical care for at least 3 years. Clinical data will be linked to a serum and DNA library; participating physicians continue their normal practice.

What it is studying. The study is collecting real-world clinical information and biological samples to measure TTP incidence, morbidity, and mortality; to record treatment responses, exacerbations, relapses, refractory cases, complications, and serious adverse events; and to evaluate prognostic scores and possible neurocognitive and cardiac sequelae.

What the researchers hope to learn. Create a large clinical database and serum/DNA biobank to study treatment effects, morbidity, mortality, relapse and complication rates, and cardiac and neurocognitive outcomes in TTP. Use the collected data to evaluate prognostic scores and to inform guidelines and recommendations for TTP diagnosis and management.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

REPTT is an observational, prospective, multi-country, multicentre and non-interventional registry in which at least 300 patients with Thrombotic thrombocytopenic purpura (TTP) in Spain and Portugal will be evaluated. The study will be carried out in the context of the usual clinical practice conditions, not imposing restrictions on the participating physician or influencing their normal clinical practice.

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other
  • Standard clinical practice

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

  • Patients with diagnosis of TTP according to International Consensus criteria from centres in Spain and Portugal.
  • Patients that voluntarily sign the informed consent. For subjects unable to provide informed consent, a fully recognized medical authority may be used according to local laws.
  • Patients between 0 to 99 years old at the time of diagnosis.
  • Note: Decision was taken to treat the patient with an specific treatment prior and independently of patient inclusion in this non interventional study.

Exclusion criteria

  • Inability to comply with study procedures and follow-up exams.
  • Patients with any type of alteration that compromises their ability to grant written informed consent.
  • Patients that do not consent to participate in the study and do not sign informed consent.
  • Patients that do not meet the criteria previously mentioned for TTP.

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Show the detailed description from the registry

TTP is a rare life-threatening haematological disease characterised by thrombotic microangiopathy (TMA) with an average annual prevalence of approximately 10 cases/million people worldwide and an annual incidence between 1.5 and 6.0 cases per million according to different studies conducted in France, the United States and in the United Kingdom. In Spain the incidence is 2,67 cases / million population per year. Acute TTP episodes cause sequelae like vascular disease or kidney damage along with other symptoms more subtle like small neurocognitive deficits and myocardial infarction. Thus, prompt resolution of acute episodes along with a better understanding of the cardiac abnormalities may allow to prevent further complications, to develop targeted rehabilitation techniques for TTP patients and to improve their quality of life. This project will collect a big database capable of providing better answers to questions related with treatment efficacy, associated morbidity and mortality, and the possible neurocognitive and cardiac sequelae derived from relapses and acute episodes. Additionally, this project will be linked to obtaining biological samples for a serum and DNA library from patients with TTP. Patients will be recruited by medical researchers specialized in haematology or by other investigators specialized in thrombotic microangiopathies disease management. This recruitment will be performed in a competitive manner. The collection period will be at least 3 years with the possibility of extending it. REPTT aims to evaluate new scores and prognostic factors of morbidity and mortality in TTP patients. The final aim is to establish guidelines and recommendation to improve the global management, diagnosis and treatment of patients with TTP in real-life.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This is an observational registry: your regular clinical care continues and the study collects data from your usual visits and medical records over about 3 years. You may be asked to provide biological samples (for a serum and DNA library) and to have routine tests done as part of clinical care. No extra treatments are assigned by the study; treatment choices remain with your clinician. The registry will record outcomes such as treatment responses, relapses, complications, and survival.

How the study is structured. A prospective observational registry: no treatments are assigned by the study. Patients receive standard clinical care at participating centers; the study collects routine clinical data and biological samples over about 3 years from multiple sites.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in Spain. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on thrombotic thrombocytopenic purpura

Clinical trials18 trials listed for thrombotic thrombocytopenic purpuraEvery trial the registry lists for thrombotic thrombocytopenic purpura, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in thrombotic thrombocytopenic purpura researchLatest monthly update: September 2026. Includes: Caplacizumab use. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
Mar 22, 2024
Primary completion
September 2026 (estimated)
Study completion
December 2026 (estimated)
Target enrollment
300 participants (estimated)
Last updated on registry
May 29, 2024
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Fundación Española de Hematología y Hemoterapía

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (7)

  • Hospital Universitario Virgen del RocíoRecruiting

    Seville, Andalusia, 41013 · Spain

  • Hospital Universitario BellvitgeRecruiting

    L'Hospitalet de Llobregat, Barcelona, 08907 · Spain

  • Hospital Clínic BarcelonaRecruiting

    Barcelona, 08036 · Spain

  • Hospital Universitario de GuadalajaraRecruiting

    Guadalajara, 19002 · Spain

  • Hospital Universitario La PazRecruiting

    Madrid, 28046 · Spain

  • Hospital Virgen de la ArrixacaRecruiting

    Murcia, 30120 · Spain

  • Hospital Clínico Universitario de ValenciaRecruiting

    Valencia, 46010 · Spain

Terms used on this page · explanations by MedicalUpdates.ai

registry
An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.
interventional study
A study in which researchers assign participants to one or more interventions, such as a drug, procedure, device, behavioural programme or other approach, to measure their effects.
follow-up
The period after treatment or enrolment during which participants are observed or contacted, for example to record side effects or outcomes.
Inclusion Criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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