Thrombotic Thrombocytopenic Purpura (TTP) research hub
9 indexed studies · 9 currently recruiting
- recruiting
Retrospective Epidemiological Study of Patients in the National Cohort of the French TMA Center
This study looks back at records of over 1,200 patients in France who had a rare blood disorder called iTTP. It aims to understand how things like heart problems and specific treatments affect their long-term health and survival. It hopes to improve care for people with iTTP.
France - recruitingNA
Intact Cord Resuscitation in CDH
This study looks at how babies with a rare condition called Congenital Diaphragmatic Hernia (CDH) adapt at birth. Researchers are comparing immediate umbilical cord clamping to keeping the cord intact for a short time, to see if it helps these babies transition better.
France - recruiting
Diagnostic Research in Patients With Rare Diseases -Solving the Unsolved Rare Diseases
This study aims to find the missing genetic causes of rare diseases where the original tests didn't find an answer. It will look at existing genetic data and new samples from patients and their families to help improve diagnosis and potentially discover new ways to treat these conditions.
France - recruiting
Rare Tumours in Children and Adolescents (STEP)
This study is gathering information about rare cancers in children and teenagers. The goal is to understand these cancers better and find improved ways to treat them. We want to make sure young patients facing a rare disease get the best possible care.
Germany - recruitingNA
Rheopheresis as Adjuvant Treatment of Calciphylaxis
This study looks at a special blood filtering treatment called rheopheresis for people with a rare skin condition called calciphylaxis, often linked to kidney failure. It aims to see if this treatment, alongside usual care, can help heal painful skin ulcers better than usual care alone.
France - recruitingNA
Genome-based Management of Patients in Precision Medicine (Ge-Med) Towards a Genomic Health Program
This study aims to use a detailed genetic test called Whole Genome Sequencing (WGS) to help diagnose rare diseases and conditions caused by genetic changes. It's for people whose illness doesn't have a clear cause yet, or where a genetic link is suspected.
Germany - recruiting
Evaluation of HEArt invoLvement in Patients With FABRY Disease
This study looks at people with Fabry disease to understand how their hearts are affected. Researchers want to find out what causes heart rhythm problems, sudden heart failure, and early death, to help improve care for these patients.
Germany - recruiting
Genetic Causes of Discrepant Clinic in Monogenic Twins
This study looks at identical twins where one twin has a rare, unexplained illness, and the other is healthy. Researchers use advanced genetic tests to find out if there's a genetic cause for the illness. The goal is to help diagnose and understand these conditions better.
Germany - recruiting
Solving Riddles Through Sequencing
This study looks at new ways to diagnose tough cases of blood cancers like leukaemia. Doctors want to see if advanced genetic testing can help provide clearer, more accurate diagnoses for people whose conditions are hard to understand using standard tests.
Germany