Submit your question that needs to be researched

[SusanSD]

Hi all,
I just attended the Patient Centered Outcomes Research Institute’s Patient Stakeholders’ Meeting in DC as a patient and advocate for more research for rheumatic diseases and I thought you should know that they want patients’ input on what should be researched. This Institute was created by the Patient Protection and Affordable Care Act by Congress in 2010. They are separate from NIH, are a nonprofit, and are supposed to focus on improving health outcomes of patients and really listen to what patients want to know and seek patients’ perspectives during the research process so studies relate more to what patients want to know.
This is your chance to put your taxpayer dollars to work for your health! I am going to submit a research question specific to antibiotic treatments for scleroderma, but there are so many other questions we need to know like the use of supplements, probiotics, enzymes, etc. So please send your question to this website this week or next. They will be prioritizing questions soon. They are also looking for patients to serve on the review panels (as part of the grant review process and you don’t need to be a PhD researcher to do this – they will provide some training and you only review a few sections of the grant like the research question/topic, relevance to practice/health, etc.).

http://www.pcori.org/get-involved/suggest-a-patient-centered-research-question-survey/

To RBF board members and volunteers, there’s more I want to share so maybe I can talk to someone over the phone sometime about future research on AP?

[Suzanne]

Susan,

I don’t have a question, but I wanted to thank you for sharing this information and for everything you are doing as an advocate!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[lynnie_sydney]

Susan – Maz is currently away but have emailed her. Hopefully she or Cheryl will be in contact over next day or so.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

@Susan(SD) wrote:

To RBF board members and volunteers, there’s more I want to share so maybe I can talk to someone over the phone sometime about future research on AP?

Hi Susan,

I have just returned home from a trip to Canada. Although planning to return home on Monday, we got delayed due to the hurricane, but managed to make it home late last night. Many thanks to Lynnie for picking this up and letting you know of the situation.

Both Cheryl and I are attending the ILADs conference in Boston this weekend, as from tomorrow to Sunday. We are hoping to connect with researchers who may be interested in pursuing studies into infectious causes for Scleroderma, specifically. We have also been working on a SD questionnaire which will be loaded at some stage onto the main website that is specifically related to the high incidence of Lyme disease (and coinfections) that RBF has been noting over the past year or so. We are hoping to produce a database of numbers, essentially, that will provide enough impetus for interested researchers to take on preliminary studies in some shape or form.

Neither of us will be home until early next week, Susan, but perhaps we can arrange a teleconference with you to talk about your ideas? So, please do feel welcome to email us next week, as it may be one of those things we get side-tracked on in the “afterglow” of the conference. It’s expected to be a pretty hefty conference line-up of some very well-known and highly-respected physicians and researchers in the field and we hope to learn a lot to bring back to share:

http://www.ilads.org/lyme_programs/boston/program/program_friday.php

Thanks for your ideas and we certainly don’t want to miss the opportunity to discuss this further with you.

[Author]

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