COPD360social Community Exchange

Welcome to the COPD360 Social Community Exchange! The purpose of the Community Exchange is to provide our members with information on new technology, products to improve quality of life for patients and caregivers and a section to promote patient owned businesses or initiatives in the COPD space. We have also included a special section to allow community members to help facilitate new and exciting research being conducted by partner organizations developing new treatments or devices or accessing patient and caregiver needs through voluntary participation using surveys.

It is our hope that the new community exchange will enable our membership the opportunity to lend its collective voice for the benefit of millions affected by COPD.


Please review information and disclaimers on each of the Community Exchange categories by clicking on the links below.

Patient Initiatives

This section to advertise patient/caregiver owned businesses or initiatives related to COPD. If you wish to advertise your business or products or initiatives please contact Bill Clark by email at wclark@copdfoundation.org. Please provide the following information: a one paragraph description of your product or business or initiative, web site address (if available) and your complete contact information; a couple pictures would also be helpful. If your product is selected for posting you will be notified by email. Any product promising unsubstantiated claims as to suitability or results will not be approved and all approvals or disapprovals are at the discretion of the COPD Foundation.

The COPD Foundation will not be held liable in any way as to the use, safety or function or suitability of any product or service. It is the recommendation of the COPD Foundation that patients consult a medical professional prior to the use of any product or service used in the treatment or therapy related to their COPD or other comorbid conditions. Any claims resulting from any unintended consequences or results including suitability are the sole liability of the seller and NOT the COPD Foundation.

Partner Surveys

Any partner organization wishing to advertise their surveys my fist contact Bill Clark by email at wclark@copdfoundation.org providing a short description and purpose of the survey, information on your organization and a copy or link to the survey. You must also include information as to how resulting data from the survey will be used, where the survey will be housed along with safeguards you have in place to protect patient privacy. No patient identifiable data can be attained or requested including but not limited to patient name, address, phone number, email address, names of treatment teams or facilities. You may not contact participants prior to, during and after participation for any reason nor may you ask them to contact you. Any violation of these guidelines will result in the removal of your survey and our refusal to approve any future surveys. All approvals or disapprovals are at the discretion of the COPD Foundation.

Patients or caregivers participating in the surveys do so by their own free will. If requested prior to, during or after the survey to provide any identifiable data or follow-up please do not respond and immediately contact Bill Clark at wclark@copdfoundation.org.

Products

Anyone wishing to advertise their products must first contact Bill Clark by email at wclark@copdfoundation.org. Please provide the following information: a one paragraph description of your product, web site address (if available) and your complete contact information; a couple pictures would also be helpful. If your product is selected for posting you will be notified by email. Any product promising unsubstantiated claims as to suitability or results will not be approved and all approvals or disapprovals are at the discretion of the COPD Foundation.

The COPD Foundation does not endorse any product or service and will not be held liable in any way as to the use, safety or function of any product or service. It is the recommendation of the COPD Foundation that patients consult a medical professional prior to the use of any product or service used in the treatment or therapy related to their COPD or other comorbid conditions. Any claims resulting from any unintended consequences or results including suitability are the sole liability of the seller and NOT the COPD Foundation.

Partner Clinical Trials

Any partner organization wishing to advertise their clinical trials my fist contact Bill Clark by email at wclark@copdfoundation.org providing a short description and purpose of the clinical trial, information on your organization and a copy or link to the clinical trial. You must also include information as to how resulting data from the clinical trial will be used, where the clinical trial will be housed along with safeguards you have in place to protect patient privacy. No patient identifiable data can be attained or requested including but not limited to patient name, address, phone number, email address, names of treatment teams or facilities. You may not contact participants prior to, during and after participation for any reason nor may you ask them to contact you. Any violation of these guidelines will result in the removal of your clinical trial and our refusal to approve any future clinical trials. All approvals or disapprovals are at the discretion of the COPD Foundation.

Patients or caregivers participating in the clinical trial do so by their own free will. If requested prior to, during or after the clinical trial to provide any identifiable data or follow-up please do not respond and immediately contact Bill Clark at wclark@copdfoundation.org.


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Research Study for People with Moderate to Severe COPD


Research Study for People with Moderate to Severe COPD

Have you been diagnosed with moderate to severe COPD? If so, this clinical study is looking for participants between the ages of 40-85 with moderate to severe COPD.

Your participation in this study will help determine how safe and effective an experimental medication called Itepekimab is when used to treat moderate to severe COPD.

The study will last approximately 72 weeks (18 months). All study-related care is provided at no cost, including exams, medicines, and other related medical care.

#sponsored by SANOFI and REGENERON

Categories: Clinical Trials

Patient Preferences for COPD Maintenance Therapies Focus Groups


Patient Preferences for COPD Maintenance Therapies Focus Groups-Are you a COPD patient Caregiver interested in participating in a Focus Group to discuss your experience? We want to hear about the patient experience and learn from you about COPD maintenance therapy If you are a patient OR a caregiver interested in participating in a Focus Group exploring patient preference and experience with nebulized and inhaled maintenance therapy for COPD, please follow the link to take the pre-screener.

Caregiver: https://www.surveymonkey.com/r/SR92TW7

Categories: Partner Surveys

Unmet needs in people with COPD Survey


Survey #1: Please take our COPD community survey, the first in a series of 3. We want to hear about the patient experience and learn from you about the key unmet needs of people with COPD. Your responses will be anonymous and fully voluntary.

Take the survey at https://www.surveymonkey.com/r/5YPBN6K


Survey #2: Please take our COPD community survey, the second in a series of 3. We want to hear about your knowledge and experience with biologics as a treatment for people with COPD. Your responses will be anonymous and fully voluntary. You do not have to participate in all three surveys, although we welcome you to do so.

Take the survey at https://www.surveymonkey.com/r/52H7XTH

Categories: Partner Surveys

Learn your risk for Alpha-1


If you have COPD, now there is more you can do and know. The FDA recently cleared a new, free* and easy way to discover your risk for a condition called alpha-1 from the comfort of your home, with the AlphaID™ At Home Genetic Health Risk Service.

If you would like to learn your risk through this service from Grifols and provide feedback about your experience with the service, we'll ask you to share via a short survey. First, let us tell you more about the service.

This FDA-cleared service includes the AlphaID At Home Saliva Collection Kit and detects 14 variants in the SERPINA 1 gene linked to AATD with at least 99% accuracy. The kit, postage, and lab processing are all free. No payment or insurance information will be required at any time. Your personal information is kept confidential and will never be shared with anyone.

To participate, you must be diagnosed with COPD and have internet access via a smartphone or computer.

Here are the steps to discover your risk using the service and provide feedback via a Grifols sponsored survey: Note, if you are not already a COPD Patient-Powered Research Network member, you can register here: www.copdpprn.org

Please log in to your portal and indicate that you wish to move through this process and complete the following steps:

  • Order your free AlphaID At Home Saliva Collection Kit
  • Collect your saliva sample and mail it to the lab
  • Read your confidential AlphaID™ At Home Genetic Health Risk Service Report, available on a secure, HIPAA-compliant website
  • • Complete a feedback survey about your experience to help others

Disclaimer: *The AlphaID At Home Genetic Health Risk Service, including the kit, is provided for free and may not be billed to patients or their insurers. There is no obligation to purchase or use any product or service offered by any manufacturer.

Categories: Patient Initiatives

Living with Severe COPD?


A close-up of a human lungs

If you’re living with severe COPD you may qualify for a new 12-week clinical research study. The study is comparing two inhaled medications for COPD, both of which are FDA approved. The study investigates whether the delivery mechanism of one drug is better than the other for people who struggle to inhale quickly and deeply.


If you qualify and choose to join the study, you will receive:

  • Evaluations of your COPD from a local physician specialist
  • All study-related care and study medication at no cost
  • Ongoing evaluations of COPD symptoms and results over a 3 to 4-month period
  • Compensation for your time and travel to attend any required study visits (6 to 7 visits over an approximate 4-month period)

To learn more about this study, see if a research center is located near you and if you qualify,
please click here (www.SevereCOPDstudy.com).

Categories: Clinical Trials

New Outpatient Treatment Option targeting the cause of Chronic Bronchitis


CSA Medical: Spray-CB Clinical Trial

Do you or someone you know suffer from chronic bronchitis, where despite medication, you continue to cough and produce mucus? A clinical trial investigating a new device treatment for chronic bronchitis is being evaluated that may help.

To be eligible to participate in this clinical research, you must:

  • Be between the ages of 40 - 80
  • Have been diagnosed and treated for COPD with chronic bronchitis (CB) for more than 2 years
  • Suffer from daily cough with mucus
  • Have stopped or are willing to stop smoking/vaping

If this sounds like you, please click here (chronicbronchitisstudy@csamedical.com) to be connected to a study site near you and learn more about the Spray-CB Clinical Trial or Find a study site location by clicking here.

Categories: Clinical Trials

Do you or a loved one suffer from a MAC lung disease?


Do you or a loved one suffer from a MAC lung disease?

We're excited to share information about new clinical trials evaluating a potential study treatment for patients with MAC lung disease. If you or a loved one have been newly/recently diagnosed with a MAC lung infection and are interested in participating in research, you can learn more here: https://www.patientwing.com/ntmstudy-arise-encore-COPD

Categories: Clinical Trials

Has Pulmonary Rehabilitation helped you live a better life?


Motivate others with your story!

If you have COPD and have benefited from Pulmonary Rehabilitation (PR), the COPD Foundation and Baystate Health invite you to share your experiences in this NIH-funded study to help motivate others to attend PR.

Share your story in a recorded 10-minute video call. Receive a $50 gift card for your time. To learn more, fill out this short contact form or contacts Raj Kotejoshyer, ScD, with Baystate Health at (413) 794-7909 or by email at rajashree.kotejoshyer@baystatehealth.org.


Baystate Health and UMass Chan Medical School
COPD Foundation
Categories: Partner Surveys

COPD-related Stigma Survey


We are conducting a research study to learn more about stigma experienced by people with chronic obstructive pulmonary disease. As you may know, many people with COPD have experienced stigma and this can have a negative effect on their physical and mental health. The knowledge we gain from this research will be useful in developing and evaluating a questionnaire designed to measure COPD related stigma.

Approximately 300 people will participate in this research. We expect it to take about 20 minutes to complete the survey. If you decide to take part in the study, we’ll ask you to complete the online questionnaires.

You are eligible to take part in this study if:

  • you are at least 45 years old
  • you are diagnosed with or being told by your primary care provider that you have COPD, emphysema, or chronic bronchitis
  • you are able to speak and read English as the first language

You are not eligible to take part in this research if:

  • you are diagnosed with a mental illness, HIV/AIDS, lung cancer, or severe physical deformities.

Before beginning the questionnaire, please read the “Consent Form for a Research Project on Development and Psychometric Assessment of the COPD-Related Stigma Scale” at the top of the questionnaires, describing the purpose of this study, benefits and risks and procedures. All of your answers will be kept confidential. No one outside of the study team will be informed of your individual answers. You will receive a $10 gift card for completing this survey.

Thank you very much for your participation. If you have any questions about this study, please contact the principal investigator, Seoyoon Woo, by phone at 910-962-3843 or email at woos@uncw.edu.

If you are interested in taking this survey, click the following link to begin.

https://redcap.uncw.edu/surveys/?s=L3PMKFA3DC

Categories: Partner Surveys

Have You Heard about Targeted lung denervation (TLD) AIRFLOW-3 Clinical Trial by Nuvaira?


The COPD Foundation is pleased to be able to share opportunities regarding research studies with COPD360social members. If you have any questions about this opportunity, please contact your physician or the link at the end of this post.

COPD patients take inhaled medicines (like ipratropium bromide and tiotropium) which help decrease mucus production and block reflexes produced by airway nerves that contribute to COPD symptoms.1 Inhaled medicines can help patients manage their COPD symptoms, but are challenging for patients in several ways:

  • Copays for COPD medications can be expensive
  • Patients must remember to take their COPD medications every day as prescribed for them to work effectively
  • Using the inhaler devices correctly and getting these medications into the smaller airways is difficult, particularly for people with poor lung function, i.e. people with COPD!

Over a three-year period, nearly 50% of patients with COPD will suffer at least one COPD flare-up despite taking their routine COPD inhalers1. A COPD flare-up is when your COPD symptoms become much worse than normal, and you need to seek additional medical care. This happens when the COPD medications are overwhelmed by airway nerve activity, typically resulting from bacteria or viruses, and are unable to keep mucus low and airways open. Patients may need urgent care or may even be hospitalized, although most flare-ups can be managed with additional prescriptions, usually for steroids and/or antibiotics. However, these medications have worrisome side effects, especially with long-term use2,3 . And COPD flare-ups worsen lung function, exercise tolerance and quality of life for weeks or even months, making it difficult for patients to recover.

Categories: Clinical Trials

Request for Patient Feedback from our partners, COPD Exacerbations (CICERO) and the European Lung Foundation (ELF)


The COPD Foundation is partnering with Collaboration in COPD Exacerbations (CICERO) and the European Lung Foundation(ELF) to ask patients to share their thoughts on questionnaires that have been developed to assess how COPD affects your daily life. We understand that questionnaires are sometimes long and difficult. We also want to hear your thoughts on how care can be improved.

Please visit the ELF website and share your story by taking the survey: https://europeanlung.org/en/get-involved/surveys/involving-patients-in-copd-research/

Categories: Partner Surveys

Why is research necessary?


Before a medical device can be approved for use in a general population, a thorough process of research must be done. Clinical studies are one of the key steps in that process. Doctors are enrolling volunteers for a treatment in a clinical study that may have the potential to reduce COPD Flare-ups.

If you have COPD and still experience flare-ups despite your medications, you may qualify for the AIRFLOW-3 Clinical Trial. The trial is evaluating Targeted Lung Denervation, an investigational treatment which may have the potential to reduce the risk of COPD flare-ups through a one-time, non-surgical, outpatient procedure.

New COPD research can’t move forward without volunteers like you. Answer a few questions to see if you may be eligible to take part. Visit https://airflowtrial.com to complete a short survey.

Categories: Partner Surveys

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