What information is collected?
The information that we need to collect about you is done so in two-parts, using a questionnaire.
The first part is completed by you, or a parent/guardian if the patient is under 18 years old, and the second part is completed by the professional involved in your care.
You can look at all of the questions in advance by viewing the example questionnaire.
Patient reported information
This will take you about 10 minutes to complete.
The type of information that you will be asked to enter yourself is listed below:
- contact details
- current and past motor function (ability to move)
- amount of pain
- use of a ventilation device (trouble breathing)
- family history
There is also a pain questionnaire and a quality of life questionnaire that you can choose to complete if you wish. You do not need to fill in these questionnaires to complete your registration with the Global FKRP Registry but the information you do provide will be used to inform health professionals about certain aspects relating to the standards of care for these conditions.
Doctor reported information
The second part of the questionnaire is completed by the professional involved in your care, which is generally a neurologist or a neuromuscular specialist, but can also be a geneticist.
The information required will be related to test results such as respiratory function, cardiac status, mutation analysis and outcome scores such as the 6 minute walk distance.
Updating your data
To make sure that the data in the Registry are correct and up to date, it is essential that we update them regularly. To do this, we will send you an email once a year asking you to tell us about any changes in your medical condition.
If there are any major changes in your details that might occur in the period between updates, for example change of address or loss of ambulation, you can easily update them yourself by logging into the registry and changing your data.