Calling all GCA patients in the USA....a research study.

[Grammy80]

Last year I took part in a research study with Pillar Advocates. It felt great to do something to enlighten people about GCA. Any increased exposure and awareness is a good thing! Plus, you receive a check for your time if you are selected. This particular one pays you $150. I've spoken with Jordan and her assistant, Brendan, and answered some really basic questions, i.e., meds, onset, vision, etc. When he asked if I knew anyone else with GCA.....I thought of all of you! Here is the information I received:

Pillar Patient Advocates is seeking adults living with Giant Cell Arteritis (GCA) and caregivers of a loved one living with GCA to participate in a 60-minute online interview. In appreciation, participants are paid $150 for their time and input. If interested, please fill out our registration at research.net/r/ZM5GPPN or email Jordan at [e-mail] with a phone number you can be reached at to go through a few screening questions. This study is for US residents only.

I hope some of you will reach out so they have diverse cases and situations. As referenced, they are interested in caregivers and the effect on the family. Thanks to all💞

[montebello]

Thanks Grammy. I responded.

[Bummed24]

Me too.

[GCAinCarolina]

I participated in this study this past week (and the one previous). The last part of the interview dealt with my reactions to the potential of a new treatment of GCA. This drug is in pill form and you would take one a day. Some of the claims they ran by me were very bold,i.e., remission after several weeks treatment,etc. So I was a bit skeptical. No company or drug names would be given. Maybe someone on this forum is privy to more details.

[Grammy80]

Thanks Carolina, very interesting. I assumed it was marketing research but had not had any meds discussed with me. That is probably due to my particular case; years of Rx, my age, vision loss etc. I still grab any opportunity to talk about GCA since I still don't encounter too many people who know what it is. I would also have been reluctant to 'change horses' in this race. 💞

[Nap1]

I responded to them and answered some questions, but never heard from them again

[PMRpro Ambassador in reply to Nap1]

The initial questions are a screener to ensure you fulfil the study requirements and have no exclusion criteria

[Grammy80]

It took some time before they got back to me the first time I participated. I'm at the same point you are for this study; I've answered their questions and still haven't heard from them... but time will tell.💞