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The Patient Voice in Arthritis Research: Research strategy for Fibromyalgia

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UCD Conway Institute

iHub (Room G026)

UCD

Belfield

Ireland

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UCD Centre for Arthritis Research invites people living with fibromyalgia to co-develop a 5-year fibromyalgia research strategy with us. We want to hear your views and experiences to ensure our research is patient-centered and relevant to you.

This 2-hour initial meeting will brainstorm the areas to focus on and the best way to achieve true patient-researcher collaboration.



An initial discussion with patients living with fibromyalgia has refined our meeting agenda to three research areas:

1) Defining a pathway of care.

Question: Who should be the primary care giver for fibromyalgia patients?

Can we develop a dedicated "Pathway of Care" for people living with fibromyalgia to make the journey through the healthcare system as efficient as possible?

2) The complex interplay of metabolism in Fibromyalgia

Question: Can metabolism and the gut flora (microbiome) inform accurate classification of fibromyalgia patients?

Can these be used to group patients, such that patients get the correct care, fast?

3) Patient Registry for Fibromyalgia

Question: Can collecting information about fibromyalgia patients allow us to learn about behavior patterns and their association with disease development?

A patient registry is a collection of standardized information about a group of patients who share a condition or experience. As fibromyalgia is a complex disease, likely consisting of numerous subsets of underlying diseases, a patient registry could be extremely valuable to identify patient subgroups and enhance treatment and management outcomes.



We would like to hear your views, queries and suggestions about these areas.

Do you think it's relevant to you? Do you see any barriers to this? Do you have ideas as to how to overcome them? Is there another area you believe should be prioritized?

Please join us and share your insights and experiences as a person living with fibromyalgia.

FAQs

What are my transportation/parking options for getting to and from the event?

By Car:

Visitor parking at UCD is free but limited (except in premium yellow parking spaces).

Visitor parking in carpark W3 (opposite the hockey stadium) would be the closest to the Conway Institute (http://map.ucdestates.ie/index.php?cat_id=42&ServiceType=48&texto=&filtromapa=on)

Those with disability parking disks, there is parking available beside the Conway Institute, please contact the organizer for details.

Please note, to access car park W3 or disabled parking close to UCD Conway, you will need to enter UCD via the Clonskeagh Gate.

By Bus:

UCD is served by numerous buses. Please see the UCD Dublin Bus interactive map for a comprehensive list http://www.dublinbus.ie/PageFiles/10644/ucd_campus_map_2.pdf

By Train:

From Connolly Station, walk to O'Connell Street, where the Dublin Bus numbers 11 and 46A can be boarded for UCD. The route 145 provides a direct route from Heuston Station to Belfield via the city centre.


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Date and Time

Location

UCD Conway Institute

iHub (Room G026)

UCD

Belfield

Ireland

View Map

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