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Found 28 clinical trials
Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes: A Natural History Study

> Other bone marrow failure syndromes: e.g. Revesz Syndrome, WT, IVIC, radio-ulnar synostosis, ataxia-pancytopenia. First degree relatives of IBMFS-affected subjects as defined here, i.e

shwachman-diamond syndrome
fanconi's syndrome
bone marrow failure disorders
fanconi syndrome
  • 18 Sep, 2022
  • 2 locations
French National Registry of Bone Marrow Failures

This is a unique clinical and biological database that collects standardized clinical information during the management of all patients with bone marrow failure syndromes (BMF) in France

  • 13 Mar, 2021
Investigation of the Genetics of Hematologic Diseases

The purpose of this study is to collect and store samples and health information for current and future research to learn more about the causes and treatment of blood diseases. This is not a therapeutic or diagnostic protocol for clinical purposes. Blood, bone marrow, hair follicles, nail clippings, urine, saliva …

blood disorder
sickle cell anemia
hematologic disorder
sickle cell disease
  • 15 Jun, 2022
  • 1 location
Diamond Blackfan Anemia Registry (DBAR) (DBAR)

The purpose of this study is to maintain a comprehensive registry of patients with the rare inherited bone marrow failure syndrome Diamond Blackfan anemia (DBA).

white blood cell count
platelet count
  • 27 Apr, 2022
  • 1 location
Clinical Care Consortium of Telomere-Associated Ailments (CCCTAA) Database

Study Description: This protocol will be utilized for the creation and management of a repository of coded clinical data on patients with Telomere Biology Disorders (TBDs) submitted by researchers from CCCTAA member institutions. Objective The primary objective of this study is to develop a shared database (repository) of coded clinical …

  • 11 Jul, 2022
  • 1 location
Diagnosis and Phenotype Characterisation Using Genomics in Patients With Inherited Bone Marrow Failure (IBMDx Study) (IBMDx)

This project seeks to perform whole genome sequence (WGS) and whole transcriptome sequence (WTS) analysis on 350 patients with suspected inherited bone marrow failure syndromes and related

  • 21 Apr, 2022
  • 1 location
The Evaluating Multidisciplinary Bone Marrow Failure Care in Bone Marrow Failure and Related Disorders.

This is a prospective hybrid implementation-effectiveness study of a model of care for patients with bone marrow failure syndromes and inherited predisposition to haematological malignancy that

  • 31 Aug, 2021
  • 1 location
Data Collection Study of Patients With Non-Malignant Disorders Undergoing UCBT, BMT or PBSCT With RIC (PRO-RIC)

This is a data collection study that will examine the general diagnostic and treatment data associated with the reduced-intensity chemotherapy-based regimen paired with simple alemtuzumab dosing strata designed to prevented graft failure and to aid in immune reconstitution following hematopoietic stem cell transplantation.

  • 26 Mar, 2022
  • 1 location