ANA positive patients needed for a new research study

[Paul_Howard]

Hi everyone,

I have received a request from researchers at University of Nottingham for a project about whether antinuclear antibodies (ANA) can be predictive of disease.

Lay summary

Patients with rare diseases frequently describe a long path to diagnosis. ANA-associated diseases are a group of such rare diseases that affect different parts of the body. Diagnosing these patients is difficult, the ANA test used to help diagnose these patients, does not always give a clear answer. It may be positive in those who do not appear to have disease (at least at the time of testing). We suspect that these ANA-positive patients may have higher rates of other problems compared to the general population, and there may be features that can help to distinguish those who will later develop disease.

We aim to describe what happens to patients with an ANA positive blood test in primary care and identify features that may predict which patients will later develop disease.

We will start by reviewing what is known about the problems patients with ANA-positive test results experience.

Then, using these findings we will research a database of GP records to compare patients with ANA-positive test results to those without. We will look to see if we can identify features that can help predict which of the ANA-positive patients will later develop disease.

We hope that this study will identify features that could be used to alert doctors to those patients at greater risk, of developing active disease, shortening the time to diagnosis, and ultimately improving patients’ lives.

Volunteer Requirements

The researchers are seeking volunteers to join a patient involvement group.

Volunteers must:

- Have received a positive ANA blood test result

- Be aged 18+

- Live in the UK

To provide a range of experiences and perspectives, we would like to include:

- A range of diagnostic journeys (protracted or quick)

- An ANA-positive patient currently without a diagnosis

- People of Black and minority ethnic heritage

- A male patient

What is expected of volunteers?

The researchers have funding for three meetings over a span of two years. These meetings will be conducted virtually for ease of access and to be geographically inclusive.

During meetings, the volunteers will help design the research study by giving their perspective on factors that they felt influenced getting a diagnosis (if they have one), and problems they have/had but which were not recognised by the doctors and nurses they saw.

Volunteers will be compensated for their time spent preparing for meetings and the meetings themselves.

How to get involved

If you are interested in being involved with this project, please email [e-mail] with a short overview of your experiences.