Open Requests for Consumer Involvement

Date postedRequesting Organization
Type of Involvement
Details
Resources


1/30/2017














American Academy of Sleep Medicine (AASM) (Sarah Hashmi shashmi@aasmnet.org, Direct: 630-737-9369  I Main Phone: 630-737-9700)









Guideline project on “ Indications for Polysomnography and HSAT (non-OSA)”.  












AASM is seeking   Patients with suspected sleep-related breathing disorders (excluding obstructive sleep apnea), sleep-related movement disorders, central disorders of hypersomnolence, parasomnias, and for monitoring of patients undergoing treatment for obstructive sleep apnea. Interested parties should contact Kolade Fapohunda (kfapohu1@jhu.edu) or Genie Han (ghan14@jhu.edu) as soon as possible.

Application form (PDF)

1/30/2017














Editorial Office for PCORI Peer Review (at OHSU)(Ms. Kira Lesley, lesley@ohsu.edu, (503) 560-4150)










Consumer representatives to serve as peer reviewers for PCORI studies










PCORI is in the process of reaching out to community organizations as part of our patient reviewer
recruitment effort. As part of a patient reviewer recruitment effort, PCORI is reaching out to CUE member organizations to identify volunteers to serve as patient peer reviewers for PCORI studies. Consumers will be asked to complete TWO application forms (one application form for CUE and another online application form for PCORI) and be asked to complete an online course on successful peer review. If selected to be a peer reviewer, you will receive a $50 visa gift card for each study you peer review. We would like to have consumers interested in serving as peer reviewers for PCORI studies to sign up here

 

Application form (PDF)



3/6/2017










The American Academy of Family Physician(Melanie Bird, MBird@aafp.org, (913) 906-6000)









Diabetic Neuropathy Rapid guideline










The American Academy of Family Physicians (AAFP) is seeking a patient representative to serve on a rapid guideline process for  diabetic neuropathy. Consumer voice is highly valuable in the final stages of development and review of this guideline. The deadline for nomination is March 15, 2017. Interested parties should contact Kolade Fapohunda (kfapohu1@jhu.edu) or Genie Han (ghan14@jhu.edu) as soon as possible.

Application form (PDF)

 

3/13/2017

American Academy of Sleep Medicine (AASM) (Christopher Harrod), Main Phone: 630-737-9700)

Guideline development project on patients  with OSA

(AASM) is seeking consumers to participate in a priority initiative to increase patient engagement in clinical practice guideline development concerning obstructive sleep apnea (OSA). CUE members or members of their organization who have undergone surgical treatment for obstructive sleep apnea (OSA) are the primary demographics. However, patient representatives who declined surgery for OSA in favor of alternative treatments are also considered. The deadline for this nomination is April 15, 2017.  Interested parties should contact Kolade Fapohunda (kfapohu1@jhu.edu)or Genie Han (ghan14@jhu.edu) as soon as possible.

Application form (PDF)

 

3/31/2017

American Academy of Sleep Medicine (AASM) (Vanessa Gonzalez), Main Phone: 630-737-9700)

Guideline development for Narcolepsy nad Hypersomnia 

The American Academy of Sleep Medicine (AASM) is seeking consumers and/or caregivers of pediatric patients with hypersomnia, idiopathic hypersomnia, Kleine‐Levin syndrome, or narcolepsy interested in participating in a clinical practice guideline. As a stakeholder, the volunteer will be contacted at different points during the course of the project for the following:

 

1. Help in developing patient‐centered research questions by completing a 15‐20 minute survey on symptoms and side effects at the start of the project.

2. Help in providing feedback on patient values and preferences for several treatments, half‐way through the project.

3. Help in providing feedback on the completed guideline.

Interested parties should contact Kolade Fapohunda (kfapohu1@jhu.edu) or Genie Han (ghan14@jhu.edu) as soon as possible.

Application form (PDF)

6/14/2017

The American Society of Plastic Surgeons (ASPS)(Caryn Davidson), Main Phone: 847-228-3349Measures development for rhinoplasty

The American Society of Plastic Surgeons (ASPS) is looking for 1-2 patients/consumers to participatte  in a measures development project for rhinoplasty. It is a joint collaboration between ASPS and AAO-HNS. Patients whjo have had this procedure performed would be ideal, as would patients having knowledge of  performance measure, or atleast evidence-based medicine principles. The time commitment is 1 conference call in late July/early August, an in person meeting in Chicago, either Sept 10 or 17, and another conference call in the spring.

Interested parties should contact Kolade Fapohunda (kfapohu1@jhu.edu) or Genie Han (ghan14@jhu.edu) as soon as possible.

Application form (PDF)

7/14/2017

MAGIC Project (Lyubov Lytvyn,   lytvyn.lyubov@gmail.com, lyubov.lytvyn@sickkids.ca, +47 948 46 259)

Colorectal cancer

screening guidelines

The ideal patient partner would be someone is eligible for colorectal screening: asymptomatic (e.g. no reason to

consider colorectal cancer, such as bleeding), aged approximately 50-75. Partners may have had experience of

colonoscopy/flexible sigmoidoscopy, and may have any comorbidities, except inflammatory bowel disease

(Crohn's, colitis, etc.). Those with a family history of colorectal cancer are also eligible. The goal is to include

patients who the guideline would apply to on the guideline panel.

Application form (PDF)

7/14/2017

American Society of Plastic Surgeons (Katelyn Stermer,   kstermer@plasticsurgery.org, +1(847) 981-5433)

Clinical practice guideline panel for Upper Eyelid Blepharoplasty for Field Vision Loss

Each Work Group member will serve as an active participant in the development of the guideline and will be responsible for determining the project scope, clinical questions, and literature search criteria. The Work Group will collectively develop evidence-based recommendation statements and draft supporting text for the guideline.

Application form (PDF)

8/03/2017

The American Physical Therapy Association (APTA) (Mary DeMars,  demars@aaos.org, (847) 384-4339)

Clinical Practice Guideline (CPG) for Total Knee Arthroplasty: Pre and Post-operative Physical Therapist Management for Adults with Osteoarthritis

Workgroup members must be available to attend two mandatory meetings in Alexandria, VA. — an introductory meeting and a final meeting. The APTA will cover the expenses for workgroup members to attend the guideline work group meetings. As a quick reference, we have included a table on page 3 which contains all of the relevant information on the work group charges and nomination details

Application form (PDF)

 



Full list: CUE's past partnerships, 2013-present

Please send all applications for involvement to Genie Han,  CUE Coordinator: ghan14@jhu.edu