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.
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).
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.
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
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.
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.
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.
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/
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.
Participating in clinical trials is one way to support the entire COPD population and help researchers develop treatment options at the same time. Two previous studies have shown that investigational study drug might reduce moderate-to-severe symptom flare-ups for people living with COPD. A new clinical trial is further evaluating this drug in individuals with COPD, and volunteers are needed.
To qualify, you must:
- Be 40-85 years of age.
- Be a current or former smoker living with COPD.
- Have a history of moderate-to-very-severe COPD.
- Have had three or more flare-ups of your COPD symptoms in the last year that required steroid treatment or medical attention.
- Have used multiple types of medications to treat your COPD in the past three months (this may be with one or more inhalers).
- Not have an asthma diagnosis.
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.
Yes, see if I may qualify!
If you have any questions about the study or technical difficulty completing the Pre-screener, you can call 888-509-1308 or email patientsupport@antidote.me.
The author of this survey is a nurse and PHD student putting together her thesis. She is asking for our communities support in gathering data. The COPD Foundation is not involved in this survey
The purpose of this study is to learn if situational factors, such as social support and stress, are associated with other factors such as mood and breathing levels, and if all these factors are associated with COPD-related fatigue. It is important to participate because we hope to learn more about COPD-related fatigue to develop better treatment for fatigue in the future. We also hope to explore the lived experience of fatigue in adults with COPD during a global pandemic as compared to prior to the pandemic.
To take the survey click on the following link: https://umaryland.az1.qualtrics.com/jfe/form/SV_74cLnRJNBEdsuZo
The O2 Clip fastens a medical oxygen hose to a person’s shirt which allows the user to adjust the tension of the hose around the ears eliminating chafing and irritation. You can walk around pulling 30’ of hose and the hose won’t slip or pull off the ears allowing it to rest comfortably just off the ears. Also, the hose won’t twist up under the chin and is simple to adjust.
Suggested retail is $14.50
For more information or to purchase contact:
Buck-RCI@comcast.net
Or by mail to:
Peter Buck
112 Chestnut
Leadville, CO 80461