Category: research

Survey: Talking to HCPs and Access 2023

Survey: Talking to HCPs and Access

Posted on by Grayson

Back in 2016, I collected some initial information about how people felt they could talk to healthcare providers (HCPs) about sexual health and function, sexual orientation, and gender. Then, in the fall of 2019, I conducted a more extensive survey. I’m still working on the results of that survey.

With the changes occurring in the last few years, though, I wanted to collect information again. Allow me to introduce you to the new 2023 survey.

This survey asks the same questions as before, such as “Have any of your physicians or other healthcare providers talked to you about sex or sexual issues?” It also has a section about how recent anti-equity efforts, such as rampant transphobia, have affected these conversations.

This survey is open as of May 28, 2023, and will close at the end of the day on July 31, 2023. It is only open to US residents aged 18 and up.

Take the survey here.

SJIA Interstitial Lung Disease

Posted on by Grayson

A new journal article details the cases of nine patients dealing with SJIA-related interstitial lung disease (ILD).

You can read the full journal article below.

Jade Tam-Williams, Chandra Swanson, Ashley Cooper, et al. Pediatric Systemic Juvenile Idiopathic Arthritis related Lung Disease: Description of clinical cohort and review of management. Authorea. May 18, 2023. DOI: 10.22541/au.168443465.51905327/v1

Research links immune cell receptors to asthma, inflammatory lung disease

Posted on by Grayson

The following is from the Cleveland Clinic as posted on Medical Express:

Researchers discovered a new way a protein called MCEMP1 contributes to severe inflammation in the airway and lungs. The discovery, published in Nature Communications, provides critical information for developing therapeutic interventions to treat long-term lung conditions, including asthma, on a biological level.

The study was conducted in a lab led by Jae Jung, Ph.D., chair of the Cancer Biology Department, director of the Infection Biology program, and director of the Sheikha Fatima bint Mubarak Global Center for Pathogen & Human Health Research.

Severe asthma is caused by airway inflammation in response to a trigger, like allergens or air pollution. The inflammation causes the airway to swell up and become narrower and stiffer, which makes breathing difficult. Asthma currently affects more than 25 million people in the U.S and 300 million people worldwide.

Inflammation is part of innate immune response, or the process the body uses to summon immune cells to combat pathogens. Inhalers treat the inflammation in the airway, but do not address the underlying biological causes of the recurring inflammation.

Mast cells release histamines and elicit other immune responses that cause allergic inflammation, so researchers examined what proteins on that cell are critical to prompting a severe immune response.

So, what is MCEMP1?

MCEMP1 is a surface-level protein on mast cells. Previous research implicated MCEMP1 in multiple inflammatory lung diseases in addition to asthma, including chronic obstructive pulmonary disease (COPD) and idiopathic pulmonary fibrosis (IPF).

When MCEMP1 expression was eliminated on the surface of the mast cell, researchers saw reduced airway inflammation and lung damage. The study showed that MCEMP1 was associated with elevated mast cell numbers. Researchers observed higher rates of inflammation and lung function defect when MCEMP1 was expressed on mast cells.

MCEMP1 is expressed highly in lung cells, but its expression is induced during immune response in other parts of the body as well. That shows the value in searching for MCEMP1 function in other parts of the body, Dr. Choi says.

“Understanding how this mechanism works in the lung not only provides us with a path to new therapies for asthma, but it could be a finding that helps us map out similar functions in other inflammatory diseases in the lung and throughout the body,” she says.

You can read the full open-access journal article on Nature.

Michael J. Fox and Rebuking Ableism

Posted on by Grayson

Person off-screen: “The sad sack story is Michael J. Fox gets this debilitating disease and it crushes him.”
Fox: “Yeah, that’s boring.”

On May 12th, Apple TV is releasing Still: A Michael J. Fox Movie. I am SO excited to watch this look back at not only his career but his early Parkinson’s journey.

Like many people, Fox felt like he had to hide his condition from the public. No one outside of his family knew for a long time. I’m sure there were many factors to this, but chief among them is ableism.

People won’t hire disabled folks for roles, assuming they can’t do specific actions or out of worry about what to do if the star’s condition worsens. Instead of being able to show up authentically in the workplace, many actors with disabilities have to hide them in order to continue working. In the meantime, they get to deal with tabloid commentary about their weight, appearance, family life, and more.

Perhaps what I’m most excited about is the interaction I opened this post up with – that focusing on a pity party or rooting this film in ableism is boring. It is! “Pity is a benign form of abuse,” Fox has said. He’s not wrong. More than that, films that lean that way act as though disabled folks are already dead, that our lives hold no more meaning.

As he says in the below around the 1:50 mark, “I love the idea that disabled people can be assholes, too.”

It’s beyond refreshing to see someone so well-known rebuke that idea and focus on sharing what real life with his disability is like. We’ve seen that with celebrities who have recently come out with their disabilities, including Selma Blair. It’s nice to see it coming from someone who played such a pivotal role in many of our favorite shows and films from the 80s and 90s.

That’s doubly true when the Michael J. Fox Foundation does such amazing work. This week, they announced a breakthrough in the search for a biomarker for Parkinson’s – “a biological test for Parkinson’s disease that demonstrates high diagnostic accuracy, differentiates molecular subtypes and detects disease in individuals before cardinal movement symptoms arise.” This will lead to early detection and treatment as well as a better understanding of this condition. It will save lives, and it could very well be an important stepping stone to a potential cure or at least better treatments.

Fox had this to say about the discovery: “There are many ways I am involved with the work of the Foundation, but I come to this result first and foremost as a Parkinson’s patient. I am deeply moved by this breakthrough and endlessly grateful to the researchers, study participants and funders who have endeavored to bring us this far. When we started PPMI, we weren’t casting about for fish — we were going after a whale. Now, here we are. Together we are making a cure for Parkinson’s inevitable.”

Fox has won multiple awards for his activism, but I missed him receiving the Jean Hersholt Humanitarian Award four months ago. If you did, too, it’s worth a watch:

I am so excited to see Fox being more present and better recognized for the work he has done and continues to do.

To close this out, I’ll share another one of my favorite lines in the Still trailer – one that likely won’t surprise you, given the name of this site.

Person off-screen: “What did it mean to be still?”
Fox: “I wouldn’t know. I was never still.”

Research Study on Cannabinoids for Californians with OA, RA, or Fibromyalgia

Posted on by Grayson

photo containing information in this post

Researchers from the University of Michigan are conducting a study on the efficacy of different cannabinoids (such as CBD and cannabis) in treating Fibromyalgia, Rheumatoid Arthritis, and Osteoarthritis and YOU have the opportunity to participate!

If you complete the study you may receive up to $500 in Amazon gift cards.

Again, this is for California residents only.

Learn more here!

The study sponsors are LEVEL and Overcome. Each participant will be in the study for 12 weeks. You can easily participate from the comfort and safety of your home using your smartphone. Again, this study is on the consumption of cannabinoids such as CBD and cannabis.

The study is limited and on a first-come, first-serve basis. To learn more and find out if you are eligible to participate, please visit releaf.at/umpain

Study: Mental Health Professional Shortage Areas

Posted on by Grayson

Did you know that 34% of Americans live in areas with a shortage of mental health providers?

One group is looking to study this in a project titled Understanding Pathways to Care For Individuals in Mental Health Professional Shortage Areas, with Investigators Dr. Munmun De Choudhury and Dr. Neha Kumar. This project is a joint research initiative between the SocWeb and TanDeM Labs at the Georgia Institute of Technology, along with various partners and stakeholders from community-based mental health advocacy organizations.

What Am I Being Asked To Do?
You are being asked to be a volunteer in a research study. This page will give you key information to help you decide if you would like to participate.  Your participation is voluntary. As you read, please feel free to ask any questions you may have about the research.

What Is This Study About and What Procedures Will You be Asked to Follow?
The purpose of this study is to better understand how people find access to mental healthcare. You will be asked survey questions about yourself, as well as the different resources you use to feel better when you are not feeling well.

If you decide to be in this study, you will be asked survey questions about where you live and how you have sought support for mental health concerns. You will not be compensated for participation in this study

Are There Any Risks or Discomforts you Might Experience by Being in this Study?
Survey questions deal with your mental health background and may touch on topics you do not want to discuss. You are not required to answer any questions and choose to not answer and move to a different question or choose to stop participating in the study at any time.

What Are the Reasons You Might Want to Volunteer For This Study?
You are not likely to benefit in any way from joining this study. However, your participation in this study may assist researchers in understanding how people in resource-limited areas find access to mental healthcare.

Study link

Questions about the Study
If you have any questions about the study, please reach out to Sachin Pendse.

Still’s Disease: Research and Clinical Trials

Posted on by Grayson

The following webinar took place back on August 31st, 2021 in honor of Autoinflammatory Awareness Month and Still’s Disease Awareness Day (Sept 7). Nonprofit supporters included International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), Systemic JIA Foundation, and the Autoinflammatory Alliance. Financial support was provided by Sobi and Avalo Therapeutics.

Current study opportunities

  • Sobi (MAS): Evaluate Efficacy, Safety and Tolerability, PK and PD, of Emapalumab in Children and Adults With MAS in Still’s or SLE (link)
  • Avalo Therapeutics (IL-18): A Study to Evaluate AEVI-007 in Participants With Adult-Onset Still’s Disease (link)

AiArthritis also shared two PDFs in a recent email –

Learn more about AiArthritis’ Still’s Disease work.

MCAS and Quality of Life Study

Posted on by Grayson

Understanding Factors Associated with the Well-Being and Quality of Life of Adults with Mast Cell Disorder

Link to participate – study ends Oct 30

Why is the survey being conducted?

Mast Cell Disorder is an increasingly widespread group of incurable chronic diseases characterised by a range of unpredictable and spontaneous symptoms, a high treatment burden, and long diagnosis lead-times. The purpose of this survey is to explore the factors associated with the well-being and quality of life of adults with Mast Cell Disorder. Results will also be used to inform the development of a wellbeing intervention for people with Mast Cell Disorder.

What does the survey involve? 

You are asked to do an online survey which will take 30-45 minutes. This will ask questions about you (your gender, age, ethnicity), your condition (type of Mast Cell Disorder, symptoms, current treatment), your support network, your healthcare experiences, and also your feelings, perceptions and views about living with Mast Cell Disorder. You can also save the survey at any point and return later – the survey will automatically give you a return code.

Who can participate in this survey? 

This survey is open to adults (aged 18 years or older) living with Mast Cell Disorder. Participants need to read and write in English.

Your consent

Completion and submission of the survey online implies your formal consent to take part in the research. It also permits your responses, including any written comments, to be used anonymously in research outputs.

Benefits and risks to you

By taking part in the survey, you can share your experiences of Mast Cell Disorder, which will help raise awareness of the effects that the condition might have on the daily lives of others with the condition. This information will be used to inform a new wellbeing intervention for people with Mast Cell Disorder. If you agree, you will have an opportunity to go into a draw to win one of 10 AUD$50 Amazon gift cards (or equivalent based on your location) as a thank you for participating in this survey. You will also have an opportunity to be invited to participate in future related research, including a wellbeing intervention.

You will be asked to give up some of your time to participate in the survey, which may be up to 45 minutes. Anticipated risks are negligible. As you will be completing the questionnaire from your own home, you will be in your own safe environment. It may be that some of the questions prompt you to think or feel more about your wellbeing. If you like to seek support for this, you can connect with your health professional and/or contact support organisations like the following in your home country (see study landing page).

How will we use any personal information?

We will summarise information across respondents so that we can describe the range of people who responded to the survey and explore commonalities.

If you choose to go into the prize draw, we will request your contact details (e-mail address) to enable us to notify the winners after the draw of the participation prizes. We will delete this information after the draw.

If you express interest in being contacted about future research or the wellbeing intervention, we will also request your contact details (e-mail address).

In both these instances, your email address will be stored separately from your survey responses, so that you cannot be linked in any way to your survey responses and cannot be identified by third parties.

No email addresses will be reported in any research publications or outputs arising from the study.

How will this personal information be stored?

All data will be entered into an electronic database that will be kept in a secure Griffith University research data drive. All data will be retained for five-years from the end of the project or, if later, the date of the last publication. It will then be deleted.

Privacy statement 

Information collected from this study is confidential and anonymous. Information will not include your name. Any personal information collected is confidential and will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. An anonymised copy of this data may be used for other research purposes. For further information consult the University’s Privacy Plan at http://www.griffith.edu.au/aboutgriffith/plans-publications/griffith-university-privacy-plan or telephone 07 3735 4375.

Your participation is voluntary

Completion of this survey is entirely voluntary. You are free to stop or withdraw from the survey at any time, without penalty. Whether or not you choose to participate in this study will have no impact on your current or future relationship with your support entity or Griffith University or any other organisation.

The ethical conduct of this research

Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the ethical conduct of this research project, please contact: The Manager, Research Ethics, Office for Research, Bray Centre, Nathan Campus, Griffith University (Tel: +61 07 3735 4375 or researchethics@griffith.edu.au).

Distribution of results

Individual results will not be provided at any point. Results will also be written up in the PhD in Clinical Psychology thesis of Kylie Veale Sotheren. Results may also be written up for publication in scientific publications/journals, and presented in relevant forums e.g., conferences.

Feedback to you

We will produce a 1-2-page summary of the findings, which will be sent to your support group or member society/organisation. We will also post this summary to the MCD and Quality of Life page on Facebook at https://www.facebook.com/MCDandQoL. Alternatively, you are free to contact the research team to receive a summary of the findings and can do so without explanation for your request.  Winners of the prize draw will be directly notified by email. Notification of the prize draw and winner locations will be published on the study webpage (https://www.facebook.com/MCDandQoL).

Questions / further information

For further information, or if you have any questions, please contact:
Kylie Veale Sotheren, Investigator, kylie.vealesotheren@griffithuni.edu.au

Link to participate – study ends Oct 30

Calling Rheumatology Patients – Research Opportunity

Posted on by Grayson

There is a study going on that may help researchers learn more about the design of clinical trials. Further, this research will support the use of patient values when designing clinical trials. This will help ensure that evidence on treatments applies to the patients who will be using them.

You may be eligible if you:

  • Are 18 years of age or older
  • Have access to a device with internet

That’s it! It doesn’t matter where you live or what diagnoses you have. I did this and it was a fun hour-long conversation. I highly encourage people to participate!

Interested? Complete this brief screening survey where they ask basic demographic information (takes 5-10 minutes). You will be asked to provide your email address if you are willing to be contacted to participate in a one-on-one interview.

For more, check out this post on Arthritis Research Canada.

Recent Advancements in Medicine

Posted on by Grayson

There have been a lot of advancements in medicine, healthcare, and the way we understand our bodies recently. I thought it would be great to take a look at some of those recent breakthroughs.

Last April, a group of researchers found a potential answer for why women experience higher rates of autoimmune diseases – B cells. Well, not just any B cells, but those with transcription factor T-bet. It’s science-heavy, but there was a write-up in Science Daily last May that goes more in-depth. One of the things I find most interesting about this is that T-bet has been shown to be somewhat of a bridge between the innate and adaptive immune systems. That means that, potentially, this could even explain the prevalence of autoinflammatory diseases, too!

A recent study found that being hungry alters how the body perceives – and responds to – pain. This has only been shown in acute pain or what they call longer-term inflammatory pain. That explains how I tend to experience different pain levels based on how much I can eat. In all honesty, I just can’t eat three meals a day. My GI tract doesn’t process things that quickly and I end up in tremendous pain. For me, though, there is a point at which being hungry can trigger my pain levels to increase.

On top of that, chronic pain itself has been found to alter how our immune systems function. This could be giant news on the road to discovering how many chronic health issues can be triggered by a traumatic event. For instance, Morgan Freeman’s fibromyalgia beginning after an intense car accident.

Discrimination has been proven to affect your partners, according to a new study. This was true regardless of the type of discrimination proving what a lot of us already knew – oppression harms everyone touched by it, including partners and loved ones.

Many people dealing with depression and another chronic illness struggle to find effective depression treatment. A new study has found this to be incredibly common. Dr. Madhukar Trivedi suggests that we need to study more about living with comorbid illness and depression in order to figure out better, more effective treatments.

To their point, researchers have been studying how inflammation affects brain cells. Interferon-alpha, or IFN-α, was found to negatively impact the birth of new brain cells while increasing the rate of death of existing cells. Since IFN-α can be used as a treatment for cancer and other illnesses, this study highlights an important issue – and, hopefully, can lead to the development of medications to battle this phenomenon.

Another study recently found that itaconate which is derived from glucose can help shut off macrophages. Since macrophages control a lot of what happens wrongly in autoimmune and autoinflammatory conditions – including potentially being fatal on their own through MAS – this finding could help save lives. This could actually explain why many of us crave sugary things when we’re feeling unwell (and explains much of my life).

Heads up for discussion of child abuse in the below paragraphs

This write-up is, uh, problematic at best. Quotes like this one show why people need sensitivity training around mental health: “People with depression or other mood disorders tend to have trouble distancing themselves from their negative memories. If we can help them remember less or forget those negative memories, then maybe they can reallocate that attention to something more positive in their lives.” That said, I found the results of the study validating – suppressing emotions is linked to a reduction in memory of a traumatic or upsetting event. As someone that still hasn’t processed a lot of things I’ve been through, it was incredibly validating to see that… even if I want to punch the graduate student for giving the quote above. Ironically enough, a study around the same time also found that this covertly happens for survivors of child abuse. They also found that the abuse had a profound effect on the myelin coating nerves, reducing it. This may help explain part of why brains of people living with PTSD and those without show very distinct changes that can be seen by the naked eye.