Prospective Psychometric Evaluation Study of a Patient-reported Outcomes (PRO) Instrument for Congenital Thrombotic Thrombocytopenic Purpura (cTTP, Upshaw-Schulman Syndrome [USS], Hereditary Thrombotic Thrombocytopenic Purpura [hTTP]
Completed
Conditions studied: Congenital Thrombotic Thrombocytopenic Purpura
In brief
The purpose of this study is to assess the psychometric properties of a recently developed congenital thrombotic thrombocytopenic purpura (cTTP)-specific patient-reported outcomes (PRO) instrument.
Key facts
- Study ID
- NCT03519672
- Run by
- Baxalta now part of Shire
- People needed
- 41
- Starts
- 2018-07-12
- Expected to finish
- 2019-04-08
- Last updated by the study team
- 2021-03-17
Who can join
Age: 12 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- The participant is an adolescent aged 12 to 17 years or an adult aged ≥18 years;
- The participant has been diagnosed with congenital thrombotic thrombocytopenic purpura (cTTP) and is currently receiving prophylactic or on-demand treatment with fresh frozen plasma (FFP), or solvent detergent (S/D) plasma, or Von Willebrand Factor/Factor VIII (VWF/FVIII) concentrates;
- In the instance that the participant is identified and recruited remotely (Direct-to-Patient (DtP) recruitment), access to the internet and possession of an internet-connecting device is required;
- The participant has provided informed consent, and in the instance that the participant is an adolescent, a legal guardian has provided informed consent and the adolescent has provided assent.
You may not qualify if…
- The participant cannot read nor write;
- The participant is non-English speaking;
- The participant is currently participating in a clinical trial.
Where it is running
- AutoCruitment — Atlanta, Georgia, United States
- Houston Methodist Research Institute — Houston, Texas, United States
- Cambridge University Hospital — Cambridge, United Kingdom
- University College London Hospital — London, United Kingdom
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.