Voluntary Survey on PSA if Interested

Hi PSA Community! It’s been so fun to watch how fast the group is growing lately. This has become a wonderful place to find PSA Support and I’m so proud of all of us for pitching and helping each other with support and info. Special thanks to Donna & Gloria, our two wonderful moderators for all the energy they put into the community.

I’m writing because a few days ago, a good friend of mine who does patient surveys professionally, Kristen Simcox (http://www.linkedin.com/pub/kristin-simcox/16/9b4/76a), reached out looking for patients with PSA to participate in a focus group. Kristen does focus groups and phone call interviews with patients and she works on a contract basis with pharma & biotech companies. She’s having a hard time enrolling patients with PSA for her latest study and wants to know if anyone in the community would like to participate.

Now, we’ve never done anything like this before and this is a commercial free zone. However, I thought some of the folks here might want to participate and give feedback to the companies that are developing their medicine. This would be 100% voluntary! They would ask you questions like, “What medicines are you taking?, “What works for you?”, and “How do you feel about your medications?” It will be a conversation. They are looking for a special profile of PSA patient so you would have to call first and answer a few questions to make sure you qualify. If you do, you’ll be scheduled a one-hour phone interview, for which you’ll be paid $150. Everything will be confidential. Again, this is completely voluntary.

Kristen has offered to donate $100 to Ben’s Friends (www.bensfriends.org), the group who runs the site, for every person who is accepted and participates. Ben and I co-founded Ben’s Friends to provide support to patients with rare diseases and we run 24 different networks like this one. We’ve never done a coroporate sponsorship or donation like this before. All of the money that pays for the site comes from us and our friends who strongly believe in the cause. Along the way, a lot of patient members have donated as well, which has been a big help. It costs us about $1,200 to run the networks a month. Everyone associated with Ben’s Friends is a volunteer. There are no salaries, we do this because we love it and believe in it. It all started when Ben, my friend, had an AVM and it helped him recover. 

We’re under no financial pressure and I don’t want you to worry about the viability of the networks. We’re confident that we can continue to fund them this way. The donation we receive would go to pay the costs of the network, that’s it. We’re making this public and asking you if you want to participate because we felt like people would want to tell their story and help the companies that make these drugs do a better job and understand who they are helping. We also know that money can be tight for some of the people here and it might come in handy.

If you would like to participate, call Ruby Schachter at 212-■■■■■■■■ ext 2048. Reference Number 11-099A and if you tell them Ben’s Friends alerted you to this, we will be eligible for the $100 donation.

As I said, we’ve never done this before so it’s all new to us. Please let us know what you think – good and bad. Please don’t hold back if you disagree with this. We love the networks and all of our friends on them and absolutely don’t want to compromise them in any way.

Let me know what you think via commenting or messages. We can chat about this too.


Scott & Ben

I think it’s a great idea. I would like to see more emphasis on PsA directed to the drug companies. Most of my information is based solely on RA (and so is my doctor’s). I am not saying anything against RA or the research for it - without it I’d have nothing - There are definitely similarities in symptoms, but there are differences too.

Left a message for Ruby…hopefully I will hear back next week. The money is nice but not why i want to do this. I want to do this is to get the word out. PsA needs exposure. If I qualify my plan is to donate the money to Ben’s Friends

Terrific Suzanne. I think there will be a good information exchange both ways!

Kristin just told me that 1 person from the network has enrolled in the survey. If anyone else wants to, they’re looking for 3 - 4 more to finish enrollment in the next day or two. No obligation, it’s completely voluntary. Just wanted to remind folks.

Call Ruby Schachter at 212-■■■■■■■■ ext 2048. Reference Number 11-099A and if you tell them Ben’s Friends alerted you to this.

For anyone who missed the initial announcement please read this. The research group is paying for your time & donating to Ben’s Friends for each participant.

Is it too late to participate? I would love to give back to this great group of people I have just met!

Hi Ella - thanks a bunch, that is so kind. I talked with Kristen just now and they completed it. If we do it again, I’ll repost it. this was a trial and it sounds like it was a success for both sides!

Thank you for checking!

Hello everyone! If the opportunity comes up again, please take advantage of it. I participated in the survey on 4/12/11. It took approximately one hour, and the survey took place over the phone and through “Adobe Web Meeting”, which allowed Kristen to show me images on my computer. The idea was advertising products geared toward PsA patients, and what were the likes/dislikes of the images and if the images were motivating or not. As I told Scott it was interesting because all of the ads were geared solely towards PsA.

glad you had a good experience Suzanne!

I called to sign up, stated I was wanted to participate in the survey, left detailed contact information and never got a call back. I was very disappointed.

hmm, I’m really sorry Gloria. I’ll check with Kristen. Did this happen with other people?

Haven’t received payment yet? Please leave a note here.

Hey, I would love to take part, but I live in England?

Oh, Ive just seen that its been completed, doh! :slight_smile:

I talked to Kristen tonight and she said there will be another survey in May. I will let everyone know.

I am not sure what happened with this survey but I signed up for it

Please hold off on signing up for now. there will be a new one shortly and I’ll let everyone know. thanks.