WorksheetsVasculitis Ireland Awareness: your data in research
Total questions: 10
Worksheet time: 5mins
What are the main challenges in Rare Disease research?
A relatively small number of people with the disease
Lack of disease classification systems (i.e. grouping similar types of the disease together)
Lack of awareness of rare diseases in the wider population
All of the above
How can you get more involved with research and share your data?
Ask to receive regular updates on the journey (future use) of your data
Have a key role in the co-production of consent wording and in the design of the research
Take part in questionnaires and research projects
All of the above
What is meant by “secondary use of data” in research?
Data initially collected for one specific research project and then subsequently proposed for another
Data that is not readily available for researchers to use for their own research
Data that was collected by researchers directly from patients for a specific research
Data that can be traced back to the level of individual cases
Why is secondary use of data important for research?
Reduces data and survey fatigue within the patient community
Data from a particular disease helps improve the knowledge about other diseases
Builds on pre existing research to support development of future medications and effective treatments
All of the above
Personal data such as name, age and location falls under EU data protection law.
True
False
My consent is always required for my data to be used in research.
True
False
When I provide my data (e.g. gender, age, medical history, blood samples), researchers are usually most interested in which of the following:
The average results across all participants
My specific results
Why is your geolocation/address important for our research?
To understand better the role of environmental factors
To gather information about your hobbies and personal life
How do we link your geolocation/address with environmental factors (i.e. temperature, pollution)?
A student follows you around with a portable sensor
A small measurement station is set up outside your home
Atmospheric data is gathered at a regional and county level, or closest data point
Your hospital visit is linked with the temperature outside
Patients with rare disease are at increased risk of identification from research data because ...
They are more likely to participate in medical research
By linking seemingly unimportant factors, someone may be exposed if there are very few such patients in a region
They have more medical records than other patients
They are more likely to use digital devices
