Studies recruiting participants
Many of us want to be able to do SOMETHING...ANYTHING.... about this dreadful disease. If we are not practitioners or bench scientists, then communication, advocacy, studies and clinical trails may seem like all we can do ... aside from charitable giving or rendering to direct aid to those in need. So... I am starting this thread about studies - not clinical trials - related to cancer that are actively recruiting participants. Ideally, it will allow an easy and efficient way for people to learn about and sign up for relevant studies. I think it might be useful in allowing us to share information about something we can DO. It's no fun to just sit and wait! Put a bit more brutally, no one is coming to save us. We must resort to self-help.
If you know of studies recruiting, please post a bit of info and a link below.
Posters, if you have disclosures (if you work for the study/researchers or are compensated for recruitment, etc.), please note those.
Thanks.
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{cross-post.... posted in another forum, too.}
Yes, patrons, strange but true... it seems that someone will actually pay you for stool samples. And give you a free t-shirt.
The Persephone Biome study... Poop for the Cure... is studying how "a healthy microbiome promotes normal immune function to prevent and fight cancer."
According to their website:
Cancer and Poop: What is the Connection? – Cancer drugs can work better or worse depending on the bacteria in a person's gut. – Helpful bacteria can help the immune system destroy cancer cells. – Harmful bacteria can cause inflammation that lowers the immune system's ability to fight cancer. – How can we know what is in a person's gut? Poop! By examining stool samples, we can develop ways to fight cancer. You can help. How? By simply donating your poop! – If you are a person with cancer, either receiving treatment or in remission, we want your stool. – If you are healthy, but have a history of cancer in your family, we want your stool. – Donating stool is easy! Persephone Biome™ will give you an easy-to-use kit with prepaid shipping. – You will receive a $50 reward card and a T-shirt for your efforts!
If you are interested in signing up, you may go to their website:
Please note that this study should not be confused with the Persephone clinical trial which examined the optimal duration of treatment with Herceptin.
I have no disclosures to make. I am not connected to the study in any way except having registered to participate. I am not compensate for publishing or recruitment.
Acknowledgement to Ingerp who recommended a post about this study.
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All of Us Research Program
The future of health begins with you
The All of Us Research Program is a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.
This is a program of the National Institutes of Health (USA).
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Not a study but Snow Companies of Williamsburg, VA, recruits patients for input on "patient engagement" on aspects of treatment and care. Often these efforts provide a modest amount of compensation. The company is legitimate and it is a way to provide feedback on the patient experience.
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Kaiser Permanente Research Bank
"What does it take to find a cure? Help drive medical breakthroughs in 2 simple steps"
Disclosures and FAQ's are provided on the website. This research bank is open to "members" at Kaiser Permanente. It requires consent and a blood draw. The blood draw can be done at the same time as a routine blood draw.... so all you KP'ers out there... sign up!
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The American Gut Project and the British Gut
The American Gut Project: The world's largest crowd-sourced, citizen science microbiome research project. When you contribute, you'll receive a sampling kit. Take and send in a sample, and you'll receive a report that shows a "snapshot" of the microbes found in your sample, along with comparisons to the rest of the population. In addition, you'll contribute to a dataset that can contribute to scientific research surrounding the gut.
While "gut" may be in the name of the project, sampling can extend as well to the skin and oral sites of the human body, as there are plenty of microbes found in these sites as well.We want to understand the gut: How different lifestyles affect its composition, establish an understanding of what a "normal" gut might be, and how to link it to clinical applications!
All of our microbiomes vary from one another, with a specific subset of species of microbes that are influenced by how we live our lives and in turn, influence our health. By gathering as much data as possible on people's guts, we can provide the means to investigate associations between the gut and factors like diet, sleep patterns, disorders, to make potential connections. Microbiome research then can hopefully make its way into a clinical setting, which will allow for the prospect of innovative therapies, diagnostics, or informed advice for our health.Fee to participate ($99 as of this posting)
American (USA) site: http://americangut.org/
British site: http://britishgut.org/
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The Dr. Susan Love Research Foundation's Army of Women sends out email blast about studies for which you may qualify. To sign up to get these announcements, go tot he Army of Women web site:
Dr. Susan Love Research Foundation's Army of Women® is a revolutionary initiative changing the face of breast cancer research. Our goals are:
- Recruit women and men of every ethnicity with and without a breast cancer diagnosis and those of high risk.
- Connect researchers with women and men who are willing to participate in breast cancer research studies.
- Challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on people.
People enrolled in the Army of Women
383,379As of 6/5/2019
How the Army of Women Works
The Army of Women® aims to connect women and men of all ages, ethnicities, and locations to researchers committed to solving important breast cancer questions. Our goal is to accelerate and increase diversity in breast cancer research. All supported studies are conducted by research teams around the country and have passed a three-step review process. Learn more here!
Supported Research
Many people think that participating in clinical research means they will have to take medications. However, clinical research includes many different types of studies! The Army of Women supports many types of clinical research, including studies that investigate how factors like behaviors, genetics, or quality of life affect health outcomes. As a member, you will receive emails outlining six study types.
Learn more about each study type here!
Don't want to wait for an eblast? You can explore active studies for each study type by visiting our Current Studies page.
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"The Breast Cancer Program Longitudinal Repository (BCPLR) is being established to fulfill the research mission of the Breast Cancer Program at Johns Hopkins and to serve investigators affiliated with it - to develop a repository of specimens with corresponding characteristics from patients seen in the breast care and cancer clinics."
Poster comment: This is a study rather that a clinical trial. In Baltimore Maryland. It is studying markers in blood and possible other tissue as well. They basically just want some blood and for you to fill out a questionnaire. The material notes that they may request medical records and even tissue samples. The program coordinator told me that they aren't requiring the tissue samples at present so, while they could at some point in the future, do not allow that part to deter participation. They would like additional blood specimens if you change treatments or have a change in status. You do not have to be receiving treatment at Johns Hopkins to participate. If I can get us closer to a cure with a few vials of blood, I would do it every day of the week.
ClinicalTrials.gov identifier (NCT number): NCT01937039
and here is the link:
Johns Hopkins Breast Cancer Program Longitudinal Repository - Full Text View - ClinicalTrials.gov
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OUTLIERS: Extreme Long-Term Survivors with Metastatic Cancer
Why do some people live for over a decade with incurable cancer?
Can others become extreme survivors?
We are looking for adults with metastatic breast cancer to help us find out!
We will identify long-term survivors with metastatic breast cancer and understand what has allowed them to be exceptional survivors.
The purpose of this research is to identify habits, medical care, and genes that help people live with cancer for a longer-than-expected time. We will first ask you questions about your medical history, your treatments, your habits, and your diet. After the survey is complete, we will re-contact some very long-term survivors who will have the option of having their genes tested. Genes are the material passed from parent to child that determines the make-up of our bodies. Tumors also contain genes that can be altered through mutations, or changes in genes. This research study hopes to identify genes in outliers and in their breast cancers that differ from other patients with a similar type of cancer.
A short, seven-question eligibility survey will help determine if you are eligible for the study. Once you have completed the survey, the study team will contact you within six (6) weeks to update you on your eligibility status.
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This is a great idea, Lumpie! Thanks for getting it rolling.
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This is not a study but is an opportunity to provide comment:
Characterizing FDA's Approach to Benefit-Risk Assessment throughout the Medical Product Life Cycle
The last day to submit comments to FDAs public docket regarding the recent public meeting-Characterizing FDA's Approach to Benefit-Risk Assessment throughout the Medical Product Life Cycle-is Monday, June 17, 2019 (by 11:59 PM ET). We encourage the submission of electronic comments at Regulations.gov (docket ID: FDA-2019-N-1468). FDA carefully reviews and considers all comments submitted to the public docket.
Additionally, the meeting recording, agenda, slides, background briefing, participant biographies, and FDA's discussion document are available on the Duke-Margolis website for your reference.
Offer comments here: https://www.regulations.gov/docket?D=FDA-2019-N-1468
Thanks to the Duke-Margolis Center for Health Policy for updates/reminders about this issue.
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From the Cancer Support Commmunity:
Our partner, Stanford University, is conducting a research study for women with a current breast cancer diagnosis and their primary caregivers. Check out this opportunity below!
We invite you to participate in a voluntary research study on the role of emotions in cancer caregiving. This study is funded by the National Science Foundation and is being conducted at Stanford University's Department of Psychology.
Our Goals:
We hope to learn how cancer caregivers manage their emotions and see how this affects the experiences of both patients and their caregivers.
Who is Eligible:
- 21 years or older
- Women with a current breast cancer diagnosis and their primary caregivers
- People who have computer and internet access
- Patient is actively receiving treatment or will receive treatment (cannot be in remission)
What We Ask of You:
The study will be completed remotely and online. It involves both patients and their primary caregivers completing a 20-min survey about emotions and health three times. The caregiver will also do a 20-min writing task three times. We expect the study to take a total of 2 hours for caregivers, and 1 hour for patients.
Benefits of Participation:
You will receive personalized feedback on your survey responses and a general summary of the results once the study is complete.
How You Can Become Involved:
You can learn more about the study on our website: https://emotionscaregiving.sites.stanford.edu/.
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Opportunity to provide comment - will be webcast:
Advancing the Development and Implementation of Analysis Data Standards:
Key Challenges and Opportunities
When: Wednesday, June 12, 2019 | 9:00 AM - 4:30 PM Where: Tommy Douglas Conference Center, Building 9 - Ballroom CD, 10000 New Hampshire Avenue, Silver Spring, MD 20903
On June 12, 2019, under a cooperative agreement with the FDA and in partnership with the Critical Path Institute, the Robert J. Margolis, MD, Center for Health Policy at Duke University will convene a public workshop to consider key implementation challenges and potential opportunities to advance the development and application of analysis data standards.
New Panelist: Former FDA Commissioner Robert Califf, MD, is joining a panel discussion that will consider key challenges and opportunities to establish a more systematic approach to collecting and submitting real-world data (RWD) to FDA as part of evidence packages. Discussion of this topic builds on the real-world evidence framework the Agency published in December 2018 in accordance with the goals of the 21st Century Cures Act to accelerate medical product development and advance innovations for patients who need them. Feedback from this workshop will inform ongoing and future data standards initiatives at FDA as well as strategic planning efforts to improve regulatory review of electronic submissions.
You can view the meeting agenda here and the discussion guide.
The webcast for this event can be found on the Duke-Margolis YouTube page and will go live once the workshop begins.
If you have any questions or concerns, please email margolisevents@duke.edu.
Register here: https://events.r20.constantcontact.com/register/eventReg?oeidk=a07efy97rj265f133f6&oseq=&c=&ch=
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Thank you Lumpie for another thread that will be invaluable to us!
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Aging and Disability Study
Researchers are seeking adults with *physical disabilities* to participate in this study to learn more about the *chronic health conditions* people living with long-term disabilities experience as they age. Participants will be asked to complete three surveys over two years, online or by phone, and will be compensated for their time.
Important note: *Physical disability* is a requirement of this study. It is not defined. You may wish to be aware that it is a requirement to participate.
https://redcap.wustl.edu/redcap/srvrs/prod_v3_1_0_001/redcap/surveys/?s=XAK8R9KNYC
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ADANN Seeks Input on Serving Older People and Latinos/Hispanics with Disabilities
The ADA National Network (ADANN) is interested in how to better serve older people and Latinos / Hispanics with disabilities. The results of these assessments will help inform outreach to support people with disabilities in understanding their rights and awareness of services.
- Older Person Service Providers Needs Assessment
If you support older people with disabilities or medical challenges, we are seeking your input on how older people get and use information about their rights under the ADA. - Older Adults Needs Assessment
We would like to better understand how to ensure older people with disabilities have information about their rights under the ADA. If you are an older person with a disability or an on-going health or medical concern that impacts your ability to participate in your community, we are looking for your input. - Latinos / Hispanics ADA Needs Assessment
We would like to better understand how to reach and support Latinos / Hispanics with disabilities in understanding their rights under the ADA.
0 - Older Person Service Providers Needs Assessment
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Thanks Lumpie. Too bad I don't qualify for that Disability & Aging study. They must be looking for people that are older than I am with disabilities. But these really are great resources. It gives me hope that certain communities will begin being more accurately represented in studies.
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Spoonie77: I just tried that one too. I think it was because of the "physical disability" requirement. Could be age, but my money is on "physical disability." They don't define "physical disability" but I assume they mean a mobility impairment. I may ping them for clarification. I couldn't agree more that "It gives me hope that certain communities will begin being more accurately represented in studies."
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The Health of Women (HOW) Study®
What is the (HOW) Study?
The majority of women who get breast cancer have none of the known clinical risk factors. This means we don't know what causes breast cancer or how to prevent it. The Health of Women (HOW) Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer. We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes. Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It's that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer.
Who is (HOW)?(HOW) is all about you and what you can do to end breast cancer. (HOW) is also about the researchers who can use this data to have a better understanding of ways we can prevent breast cancer. (HOW) is all of us, working together, to bring an end to this disease. The (HOW) Study is being conducted at the Dr. Susan Love Research Foundation, in collaboration with City of Hope Comprehensive Cancer Center.
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A Study of the Inherited KRAS-Variant Mutation and Breast Cancer Risk
Clinical Validation of the Role of microRNA Binding Site Mutations in Cancer Risk, Prevention and Treatment (NCT02253251)
Summary
Researchers have identified an inherited genetic mutation—a KRAS-variant—that may increase a person's risk of developing breast or other types of cancer. This study will follow participants for 10 years in order to analyze the association between the KRAS-variant mutation and cancer risk. The researchers will also look at the effect that different lifestyle factors have on cancer risk. All participants will have a saliva sample tested for the KRAS-variant. To be eligible, participants must have a personal or family history of breast cancer.
What's involved:
All participants will provide a saliva sample and answer questionnaires periodically over 10 years. Participants will be able to get their KRAS-variant test results after submitting their sample, at a discounted cost ($295).
Click here for the Eligibility Survey
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Judge upholds rule expanding access to short-term health plans
A federal judge upheld a Trump administration rule extending the duration of short-term health plans, which do not comply with the Affordable Care Act's coverage requirements, from three months to one year, noting the rule's potential negative impact is minimal "but its benefits are undeniable." The plaintiffs say they will appeal the ruling.
The Hill (7/19),CNN (7/19),HealthLeaders Media (7/19)
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This is a great thread - I appreciate all your efforts to organize this information for the rest of us. I also like to take an active role and contribute what I can. I have a background in biology and health administration and know the value of studies like these. I just enrolled in 3 from this thread. I’m especially interested in the first one, I had repeated episodes of c. Diff during taxol and always wondered if there was a link between that and my lack of response to that chemo.
Thanks, Lumpie - keep up the good work!
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Thank you! Signed up for the research with a Kaiser Permanente and U of Wisconsin. I am already involved with MBC Project
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I was invited to donate blood and biopsy tissue to a research bank recently. I told the person I would only be interested in donating tissue to a project that would look at ILC separately from IDC. We desperately need research on ILC and the only way to get a statistically significant sample is to have a project that is multi-institutional. We are being neglected and it is not ok. It’s almost discrimination. Many times a separate ILC analysis could be made part of the project if the researchers bothered to do it.
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Just wanted to say that I was a participant in Dr Susan Love’s HOW study mentioned above and received an email on July 19th that they are closing the study for data collection and will now start to look at the information collected to formulate conclusions.
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Interesting discussion about the All of Us Study and the program communication director's personal history and inspiration to participate:
https://www.facebook.com/createthegood/videos/474192556746448/
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The Laboratory for Brain and Cognitive Health Technology at McLean Hospital is collaborating with the National Cancer Institute (NCI) to implement a study looking at cognition in those who have been affected by cancer.
The study takes about an hour and includes completing two questionnaires about your background and 12 tasks that measure your attention and cognitive style. At the end, you will receive your scores and learn how you compare to others who have completed the same tests.
Eligibility:
- We are seeking women and men who have a current or past diagnosis of cancer between the ages of 18 and 89.
- However, you cannot be currently receiving treatment for cancer (e.g. surgery, chemotherapy, radiation therapy, or hormonal therapy etc.)
To participate in the study, click or copy and paste this link:
Questions? If you have any questions about this study or your eligibility, please email bachtech@mclean.harvard.edu. Please mention "Cancer Study" in your message.
https://testmybrain.org/launch/nci_bridgestudy/NCIentry.php?g=s0 - We are seeking women and men who have a current or past diagnosis of cancer between the ages of 18 and 89.
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Hi Lumpie,
The Persephone study may be a scam...have you heard of anyone who signed up and received the poop kit, and payment? No follow up email, no kit here.
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Hi Lumpie,
I may have posted my question in the wrong thread.
Did you receive any follow up after registering for the poop study? No email or kit here- could be a weird scam?
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Hi Musicgal: Yes. I received my kit promptly and recently received my results.... although I am having a hard time interpreting them. (Except that my mix of ... enzymes or whatever... indicates that I have an inordinately high risk for obesity. That's disappointing.) Challenges with interpretation of details are not too surprising given that this is an aspect of health that I think is not often explored by allopathic docs - so it's not familiar stuff. Persephone is based in Johnson & Johnson's start-up incubator JLabs in San Diego at UCSD and they have had a reasonable amount of press coverage. I am pretty confident that they are legit. If it has been a while since you ordered and you have not heard from them, I would reach out to request a resend of the kit of at least a timeline for delivery. Good luck and sorry you have encountered a delay!
Here are a couple of publication that have reported on Persephone:
https://cen.acs.org/biological-chemistry/microbiome/Inspired-microbiome-poop-pills-gut/97/i16
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IT'S ABOUT TIME
the It's About Time campaign encourages metastatic cancer patients and their families to share their stories in an effort to build broader understanding of this disease, as well as the need for more research dollars toward treatments and a cure. The campaign also aims to elevate the voices of patients who serve as their own health care advocates so they can live each moment to the fullest, and to cherish all the time they have.
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