An observational study in Afibrinogenemia, Congenital, sponsored by University Hospital, Geneva. Completed at 28 sites in 21 countries. Open to participants aged 8 Years and older. Per ClinicalTrials.gov, last updated 2020-11-12.
Sponsored by University Hospital, Geneva · Observational
The aim of this observational study is to evaluate the quality of life in patients with congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult patients.
In this observational study, children and adults suffering from congenital afibrinogenemia confirmed by biology will be enrolled. All patients will receive a questionnaire on quality of life in their own language during a routine visit and filled out by the patient at home. A general questionnaire will be filled out by the patient's physician.
32 studies on the registry are indexed under Afibrinogenemia; 5 are open to participants now.
This study's enrollment of 250 is above the median of 150 across 11 observational studies indexed under Afibrinogenemia.
Browse Afibrinogenemia studies →University Hospital, Geneva is the lead sponsor of 379 studies on the registry; 70 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients suffering from congenital afibrinogenemia
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Other: Questionnaire quality of life
The influence of the afibrinogenemia on the patients' quality of life assessed by the Haemo-QoL SF questionnaire (for children) and the Haem-A-QoL questionnaire (for adult)
The quality of life questionnaire includes item assessing: * Physical health * Feeling * View * Family * Friends * Others * Sport and school * Treatment * Perceived support * Dealing * Future * Relationship
Time frame: At inclusion
Impact of the afibrinogenemic patient's clinical phenotype on the patients' quality of life
The clinical phenotype will be assessed by a general questionnaire including data on: * Bleeding events * Bleeding events treatment * Thrombotic events * Thrombotic events treatment * Fibrinogen replacement (type of product and modality of replacement)
Time frame: At Inclusion
Plan to share: No
Ran from Jun 2016 to primary completion in Jul 2019, 37 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Nov 2020. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.