Connect
Anyone familiar with Rare Patient Voice?
I’m curious if anyone is familiar with a company called “Rare Patient Voice,” which connects people with rare diseases to research studies or surveys. I have another “rare” condition and the moderator of that FB group posts a company link intermittently. I completed initial info, but am now hesitant to enroll in a study.
Bronchiectasis is also on their rare disease list.
I’ve volunteered for safe or minimally invasive studies over the years and my late husband benefitted from a clinical trial, but all thru universities or hospitals with review boards. I want to help researchers access appropriate study groups (us!) and know it’s challenging, but also want to be careful with my info. BBB shows a few complaints, but only about payment to participants. That’s not my concern, but think it’s a red flag?
Anyone know about the company? Participated? Thoughts?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
In general I am careful with my medical record and cautious about signing up for various research studies. One exception is I did enroll in a patient registry at the local pulmonary office. They de-identify your record and I can opt out at any time. They use this "pool" for finding participants for clinical trials.
I did see something on Facebook similar to what you describe. The registry participants had to be willing to provide sputum samples every now and then. Apparently, the company was the in the "specimen" collection business as they were collecting all sort of things.
-
Like -
Helpful -
Hug
1 ReactionI have only responded to inquiries from my Clinic, the support organizations (like the Lung Association) or directly to the clinical researchers (using the Duck Duck Go slightly more secure search engine I locate them with key words.) Not interested in sharing info with 3rd parties.
-
Like -
Helpful -
Hug
2 Reactions@pacathy : I am new here, and I see a pulmonologist at Penn Medicine. Since I'm new not sure of what's considered OK on this site, but I would be grateful to touch base with you about your experience at Penn and with bronchiectasis in general. Thanks!
Lynn
Welcome to this very helpful group. I’m sorry you need to be here, but think you’ll find it a great resource. I find it’s quite open to any questions.
How long have you been diagnosed? How are you doing?
I’m three years post diagnosis and better than I was for a couple years prior to diagnosis. I was plagued by a persistent little cough and intermittent episodes of severe coughing with low grade fevers. I wasn’t too sick to carry on, but just not well. I was prettynew to Philly and access to care was difficult due to post COVID impacts. My then PCP was no help and f/u CT’s after an urgent care visit led to diagnosis of probable MAC. I was on long wait list at Penn, but lucked into a cancelled appt at Mayo Rochester where I got official diagnosis of mild bronchiectasis and a treatment plan. MAC cultures from a bronch were negative and I’ve been on mostly a preventive plan with airway clearance since. My sinuses/allergies were a contributing factor and are better controlled with meds. Coughing fits are unusual now.
Once I got official bronchiectasis diagnosis from Mayo, I qualified for Penn’s bronchiectasis clinic. My initial appt at Penn (made before Mayo) had been for “second opinion” for my very abnormal CT and they switched it to clinic. I’m very happy with my doc and staff there.I am probably one of their least sick patients now, but they respond quickly and kindly to MyChart questions and when I got Covid, the on-call doc was great.
If you have more questions (and most do), I’m happy to answer them. I also suggest that you start a new thread since there are more Penn patients here who might not read this one due to title. The group as a whole is terrific with general questions regardless of where you’re treated. It sometimes takes day or two.
Dear Cathy,
Thanks for your kind reply!
I was diagnosed with mild bronchiectasis in 2018 when I was still out in San Francisco. I've been doing fine since then with the occasional exacerbation -- and then a bombshell in October 2024: a sputum culture I submitted during a flare-up indicated MAC. Since then I had a bronchoscopy to confirm MAC and have started the antibiotics.
To be honest I didn't know there is a bronchiectasis clinic at Penn -- I'm probably in it and just don't know. I see Dr. Michael Rey at Harron Lung Center whose bio says he is affiliated with the Bronch. Clinic.
I will copy this reply into a new thread as you suggestion.
As I said I don't know what's "proper behaviour" on this platform but if you'd ever be willing to chat on the phone I'd be grateful.
Sincerely,
Lynn Aylward