Patient/parent groups in Rheumatoid arthritis

[Guyserbun007]

Greetings everyone,

I am currently involving in a systematic review research project regarding screening testings’ (ie.: antinuclear antibody (ANA) testing) accuracy on autoimmune diseases (ie: juvenile rheumatoid arthritis). We are in a process of identifying potential key informant (KIs) to be recruited for partaking and contributing in various aspects of the research. We have contacted and obtained agreement from a number of clinicians in both the pediatric and rheumatology fields. But we experience difficulty in identifying people from the patient/parent groups. Diagnostic accuracy (ie: sensitivity and specificity) are fairly technical terms, and we are unsure how much and in what aspect people from the patient/parent end may contribute.

Anyhow, we would like to know as many patient/parent-oriented groups (or initiatives/organizations) as possible specifically focusing on rheumatic diseases (ie: juvenile idiopathic arthritis). So that we can contact for potential KIs from them. There are a few groups we have in mind, such as James Lind, but more number of groups means greater chances of success in finding the right KI.

Any thoughts and suggestions will be much appreciated.

[naturelover]

All the best in your research work. I hope you are able to get the desired suggestions and support from all around. Wish you all the best in your endeavor.

[naturelover]

I am wondering how come no other member has replied to you, so far. The other day I just discussed with my doctor about this. He was very forthcoming on this kind research work. Keep updated.

[Guyserbun007]

Thanks for keep tracking on the progress of this tread, NatureLover, we are government-funded research group and it was a relatively new practice to implement views and opinions from the patient/relative population. I think it's a good and valuable practice as sometimes researches may overlook what really matters in patients.

[Guyserbun007]

Do you think posting it in the lounge is the suitable location in the forum?

[naturelover]

Guyserbun007 wrote:

Do you think posting it in the lounge is the suitable location in the forum?

Yes, of course. I do think so to have more views and suggestions. But, it doesn't mean our members are not viewing other places. It could be a casual miss.

[prasanth5]

All the best and I wish the project all success. This kind of survey or a project brings the sufferers together and the probability of a successful evaluation takes place by your endeavour. Successful evaluation consists in identifying the patients, groups, symptoms, methods of cure such as ayurveda and siddha forms etc.