Vasculitis Ireland Awareness: your data in research

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