Thursday, June 19, 2025
Tuesday, May 28, 2024
MS Trial Alert: Investigators Recruiting People with Relapsing-Remitting Multiple Sclerosis for Study Adding a Potential Myelin Repair Therapy to Disease-Modifying Therapy
Summary:
Researchers at 25 sites across the United States are recruiting 168
people with relapsing-remitting multiple sclerosis for a study
determining the safety and potential effectiveness of adding to disease-modifying therapy
the experimental, oral therapy that may promote the repair of
nerve-insulating myelin (PIPE-307). The study is sponsored by Contineum
Therapeutics.Details:Background:
PIPE-307 is a molecule that inhibits the muscarinic type 1 (M1)
receptor. The M1 receptor is a molecule in the brain that is known to
prevent the development of cells that make myelin, the insulation of
nerve fibers that is damaged in MS, and the formation of myelin itself.
This study will test whether adding PIPE-307 to approved
disease-modifying therapies is safe and potentially effective.Eligibility:
Participants should be 18 to 50 years old with a diagnosis of
relapsing-remitting MS. They should have been on any MS
disease-modifying therapy for six months.Participants
will be randomly assigned to receive one of two doses of PIPE-307 or
inactive placebo, once daily by mouth, for 26 weeks. Subjects may remain
on their existing disease modifying therapy. The primary outcomes being
measured are the number of people with adverse events and vision acuity
(an indication of the health of the optic nerve and vision pathways in
the brain). Secondary outcomes include measures of disability
progression and disease activity on MRI scans.The
study will include routine blood draws, neurological assessments, MRI
scans, and a remote sensor worn on the ankles to assess walking (for
those subjects who agree to wear the device for short intervals during
the study). People will undergo a series of screening assessments to
determine eligibility, and then return to the site for follow-up testing
at multiple times during the treatment period.Contact:
To learn more about the enrollment criteria for this study, and to find
out if you are eligible to participate, please contact the site nearest
you:
ARIZONAMegan HamiltonXenoscience, Inc.2601 N 3rd Street Suite 125Phoenix, AZ 85004602 274 9500SFLITMAN@XENOSCIENCE.COMMadison Turner, Ashely MitchellArizona Neuroscience Research, LLC3805 E Bell Rd. Suite 2400, Phoenix, AZ 85032480-210-8723madison@centerforneurologyandspine.com
ashely@centerforneurologyandspine.comCALIFORNIACasey Holden, RNREDI (Sutter Health)2850 Telegraph Avenue, Suite 110, Berkeley, CA 94705510-204-1610casey.holden@sutterhealth.orgCOLORADODevon GlazeColorado Springs Neurological Associates2312 N. Nevada Ave Suite 300Colorado Springs, CO 80907719-389-1126dglaze@csneuro.comFLORIDAKelly CalistriAqualane Clinical Research3200 Bailey Lane, Suite 180, Naples, FL 34105239-529-6780kelly@aqualaneresearch.comJodi MummertMS & Neuromuscular Center of Excellence3190 N McMullen Booth Road Suite 200, Clearwater, FL 33761(813) 431-4913jodi@gulfcoastcta.comClellia BergaminoVero Beach Neurology and Research Institute1040 37th Place Suite #201 Vero Beach FL 32960772-4492-7051 or 772-299-4304cbergamino@geodysseyrsch.comNicole DavisARS Brain and Spine1211 Dunlawton Ave. Port Orange, Fl. 32168386.204.0960 ext 632Nicole.davis@accelclinical.comGEORGIACarlyn R. Kappy, RD, LD, CCRPShepherd Center2020 Peachtree Road, NWAtlanta, GA 30309404-367-1375carlyn.kappy@shepherd.orgAndrea LevinVelocity Clinical Research6602 Waters Ave., Bldg C Savannah GA 31406912-790-4837alevin@velocityclinical.comINDIANASarah CollinsIndiana University School of Medicine Department of Neurology355 W. 16th Street, Suite 4700Indianapolis, IN 46202317-963-7315SQCollin@IU.eduKANSASLisa Schmidt, LPNUniversity of Kansas Medical Center3901 Rainbow Blvd, MS 2012, Kansas City, KS 66160913-588-3968lschmidt@kumc.eduMASSACHUSETTSJillian PellegriniNeurology Center of New England P.C.9 Payson Road, Suite 100, Foxboro, MA, 02035781-551-5812 opt 6jpellegrini@myneurodr.comMISSOURIAmber T. Smith, BS, MAWashington University School of MedicineDepartment of Neurology - John L. Trotter MS Center660 South Euclid Ave Campus Box 8111St. Louis MO, 63110314-362-3493 (p)ambertsmith@wustl.eduNEW MEXICOEmily Reese and Andrea RodriguezMS Specialty Clinic at the University of New Mexico's Health Sciences CenterNeurology Department MS Specialty Clinic
915 Camino de Salud NE, Albuquerque, NM 87131(505) 272-0959EjReese@salud.unm.eduandreRodriguez@salud.unm.eduNEW YORKAllison EmborskyDent Neurologic Institute3980 Sheridan Dr Amherst NY 14226716-558-3543
aemborsky@dentinstitute.comOKLAHOMAMicki DrakeOMRF Multiple Sclerosis Center of Excellence820 NE 15th St., Oklahoma City, OK 73104405.271.6242Micki-Drake@omrf.orgTENNESSEEKim PuccioSibyl Wray, MD Neurology, PC dba Hope Neurology2060 Lakeside Centre Way Knoxville, TN 37922865-299-5564kpuccio@hopeneuro.comTEXASZenaida HernandezBhupesh Dihenia MD PA3815 23rd Street, Lubbock, TX 79410 USA806-368-9415researchbhd@gmail.comElizabeth MartinezUniversity of Texas Health Science Center at Houston6410 Fannin, Ste 1014Houston, TX 77030(713) 704-4137elizabeth.martinez@uth.tmc.eduFahim DayaniClinical Trial Network713-484-6947fdayani@ctntexas.comWASHINGTONElisa McGeeUniversity of WashingtonMcMurray Building NWH campus, 1536 N 115th Street, Seattle, WA 98133206-598-9260emcgee@uw.eduAmelia JohnsonVirginia Mason Medical Center1100 9th Avenue Seattle, WA 98101(206) 287-6260amelia.johnson900@vmfh.orgTonya StiggerMultiCare Institute for Research & Innovation (MIRI)915 6th Ave. Suite #101, Tacoma, WA 98405253-403-1208Tonya.Stigger@multicare.orgDownload a brochure that discusses issues to think about when considering enrolling in an MS clinical trial (PDF)
Without participants in research studies, MS research would come to a standstill. Read more here.
Sunday, February 18, 2024
Disparities in Pregnancy Experiences Found Among Black, Hispanic/Latinx and White Women with MS
Researchers examined medical records of women with MS in the U.S. and
their pregnancy outcomes, comparing those of Black, Hispanic/Latinx, and
white people. They reported that those identifying as Black or
Hispanic/Latinx tended to enter pregnancy with higher levels of MS
disability and often with fewer health care resources. There were also
differences in types of delivery, birthweights, and socioeconomic
factors.
Why Does This Matter? This study adds to the growing
awareness of health disparities and can inform ongoing efforts to
improve care for everyone living with MS.
Background: MS is highly individualized, and disease
characteristics and a treatment plan are significant considerations in
family planning and pregnancies. These investigators wanted to
understand how healthcare inequities may impact the pregnancy outcomes
of Black and Hispanic/Latinex women. Previous studies suggest that
prenatal care is especially important for Black and Hispanic/Latinx
women because they tend to have higher risks of high blood pressure,
diabetes and other disorders that may complicate their pregnancies.
Study Details: To better understand differences among
women with MS and their pregnancy experiences, Dr. Riley Bove
(University of California, San Francisco - UCSF), a National MS Society
Harry Weaver Scholar, and collaborators examined medical records from 9
MS centers in the U.S. They looked for pregnancy and delivery
information of women with MS or CIS
(a single neurological event that indicates early MS) between 2010 and
2021. They analyzed 294 pregnancies that resulted in live births.
Results: Some differences they found included:
- Black and Hispanic/Latinx women tended to be younger than white women when they became pregnant, and they had higher levels of MS disability when they became pregnant.
- More white women had private insurance, and more received an ultrasound exam at 14 weeks of pregnancy.
- Black women had the highest rates of emergency cesarean deliveries, and Hispanic/Latinx women had the fewest delivery complications. Babies’ birth weights of both tended to be lower than those of white women.
Comment: The authors suggest that some reasons for the differences may include availability of transportation, types of insurance, social support, and access to prenatal care. Studies like these can inform ongoing efforts to improve care for everyone living with MS.
Wednesday, February 7, 2024
Why Do Women Have More Autoimmune Diseases? Study Points to X Chromosome
By Carl Zimmer
Women are much more likely than men to have their immune system turn against them, resulting in an array of so-called autoimmune diseases, like lupus and multiple sclerosis. A study published on Thursday offers an explanation rooted in the X chromosome.
The research, published in the journal Cell, suggests that a special set of molecules that act on the extra X chromosome carried by women can sometimes confuse the immune system.
Independent experts said that the molecules are unlikely to be the sole reason autoimmune disease skews female. But if the results hold up in further experiments, it might be possible to base new treatments on these molecules, rather than on the current drugs that blunt the entire immune system.
“Maybe that’s a better strategy,” said Dr. Howard Chang, a geneticist and dermatologist at Stanford who led the new study.
Male and female embryos carry 22 identical pairs of chromosomes. The 23rd pair is different: Females carry two Xs, while males carry an X and a Y, which lead to the development of male sex organs.
Each chromosome holds genes that, when “switched on,” produce proteins to do work inside of cells. You might expect that women, with two copies of X, would make twice as many X proteins as men do. Instead, they produce about the same level. That’s because one of the two X chromosomes is silenced.
A molecule called Xist clings to the second X chromosome “like Velcro,” Dr. Chang said. As hundreds of Xist molecules wrap themselves around the X chromosome, they completely shut it down.
Keeping one X silent is crucial to women’s health. If a gene on the second X chromosome escapes Xist’s control, it will result in an excess supply of proteins, some of which could be toxic.
In 2015, it occurred to Dr. Chang that the silencing itself might also have a downside. His epiphany occurred while he was preparing to take his medical board exams to renew his license as a dermatologist.
As part of his studies, Dr. Chang had to brush up on autoimmune diseases, memorizing the names of human proteins that can be targeted by a misdirected immune system. When he looked at the list, he was surprised to see some familiar names.
When Dr. Chang isn’t working as a dermatologist, he researches the X chromosome in his lab. He noticed that many of the proteins involved in autoimmune diseases also helped Xist silence the X chromosome.
Maybe, Dr. Chang thought, that was no coincidence.
The new study emerged from years of research testing his hunch that Xist molecules could cause autoimmune disease. He and his colleagues studied a strain of mice in which the females are at high risk of the autoimmune disease lupus, while the males never develop severe cases.
The researchers genetically engineered the male mice so that they, like the females, produced Xist. “Once the male mice express Xist, they get much worse levels of immune disease,” Dr. Chang said.
The researchers also found that people with lupus or two other autoimmune disorders had high levels of antibodies to Xist-related proteins in their blood.
Sunday, February 4, 2024
Researchers Seeking Black Americans with MS to Participate in Genetics Studies
Help Find Clues to the Cause and Treatment of MS
Researchers at the University of California MS Genetics Project are
studying how MS affects Black Americans with MS. The university
maintains a unique repository of DNA and other biological materials with
the support of the National MS Society.
Why Does This Matter? New research shows that more
Black people are diagnosed with MS than previously thought and that they
may have a different disease course. Genes are known to play a role in
determining who is susceptible to developing MS and may also influence
the severity and course of the disease. Identifying the exact location
of MS genes could help determine who is at risk for developing the
disease and may provide clues to its cause, prevention, and better
treatment.
Focusing on Black, Hispanic/Latinx, Northern European, and other
ancestral groups, and searching for what is common and what is different
in their DNA sequences may help identify the precise genetic variants
that contribute to MS.
What is involved? It is not necessary to travel to San Francisco to participate in this study.
Once an individual has completed the initial online intake form and has
agreed to participate, they are emailed the links to two additional
online forms and sent a kit via express mail.
The kit includes a consent form, a health information privacy form, and a
medical records release form. The kit also includes everything
necessary for the blood draw, which can be taken to your local Quest
Diagnostics Lab, where the blood can be drawn and then returned in a
prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the
study participants.
Individuals recently diagnosed with MS living in the San Francisco Bay
Area are also eligible to participate in an MRI study to identify
relationships between genetic profiles and tissue damage in the brain
and spinal cord.
Please note: this study cannot enroll international participants at this time.
Contact:
To participate or request additional information, please complete this brief intake survey.
OR you may contact the UCSF DNA directly:
Clinical Research Coordinator
UCSF Multiple Sclerosis Genetic Susceptibility Project
675 Nelson Rising Lane, Suite 235A, Box 3206
San Francisco, CA 94158
Email: msdb@ucsf.edu
Website: https://msgenetics.ucsf.edu/
Saturday, December 30, 2023
Promising Experimental Treatments for Multiple Sclerosis
What’s on the horizon for people with multiple sclerosis? Dedicated doctors, scientists, and volunteers are working today to answer that question and find tomorrow’s breakthroughs.
Several experimental treatments are being studied to figure out whether they’re safe and effective for people with different kinds of multiple sclerosis (MS) and at different points in their journey.
The main research goals are to find new ways to stop MS from getting worse or even to reverse nerve damage and the disability that can come with it. Eventually, the hope is to end MS forever.
That’s a tall order for sure, but progress is being made in laboratories and medical centers all around the world.
Resetting Your Immune System
When you have multiple sclerosis, your immune system attacks your central nervous system. So what if doctors could flush out your “bad” immune system and give you a new one? That’s the basic idea behind a type of bone marrow transplant called autologous hematopoietic stem cell transplant (AHSCT).
- Immature stem cells made in your bone marrow are removed from your blood.
- These cells are sort of cloned and many copies are made.
- The bad immune system’s “hard drive” is wiped clean with high-dose chemotherapy.
- The immune system is rebooted with the fresh stem cells that don’t attack your nervous system.
Since they’re your cells, they can’t be rejected. But it will take your body about a month to replace your immune system. That puts you at risk of potentially life-threatening infections, including COVID-19 and others.
The procedure is not new but not approved by the Food and Drug Administration. It could be soon, says Ben Thrower, MD, a neurologist and medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta and senior medical advisor for the Multiple Sclerosis Foundation.
In fact, the National Institutes of Health is sponsoring a clinical trial comparing AHSCT against the most widely used and effective treatments for relapsing-remitting MS.
This is the same procedure actress Selma Blair had in 2019, he adds. Her journey is the subject of a 2021 documentary called Introducing, Selma Blair.
Talk to your neurologist about whether you should try AHSCT. Many Americans go to other countries for this treatment.
Doctors are exploring other stem cell approaches. One stem cell transplant therapy being tried at Atlanta’s Shepherd Center is intended to treat all types of MS: relapsing-remitting, primary progressive, and secondary progressive. The procedure uses what’s called mesenchymal stem cells. It may be able to repair damage and reverse disability.
Mesenchymal cells are more mature than embryonic stem cells, which have a better ability to repair but are risky. “Once you put embryonic cells into the body, you lose control and you can’t take them out once they’re in. They can turn into cancerous cells or tissue you don’t want them to develop into,” Thrower says.
Mesenchymal cells offer more control and are safer to use. The trial in Atlanta infuses these cells into volunteers through a vein. Unlike AHSCT, it doesn’t destroy the immune system.
But the jury is still out on this approach. It’s only in the first phase of research, so it’s years away from becoming an approved treatment.
Monday, December 25, 2023
Ways To Help Advance MS Research
Researchers are committed to finding solutions for everyone affected by
MS — the very people who hold the key to the answers. Without
participants in research studies, MS research would come to a
standstill.
People with MS, and sometimes family members, can help advance MS research by:
- responding to surveys online
- sharing their voices and ideas through NARCOMS and iConquerMSTM, organizations that amass volunteer-submitted information
- volunteering for clinical trials and other studies
- donating DNA from saliva and blood samples
- arranging for brain or spinal cord tissue donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS. Blood samples also can be donated for use in MS research studies.
Assess each opportunity and make an informed decision before agreeing to
participate — understand the possible benefits and risks. See our Guide to Participating in Clinical Trials.
Everyone can get involved to support research investment, or advocate so that Congress provides funding for MS research and supports other efforts such as understanding incidence and prevalence.
Participate in a Clinical Trial
Clinical trials help to determine if treatments and other interventions are safe and effective. Studies enrolling diverse populations are monitored to ensure that the rights and safety of all participants are protected. Without the participation of people with MS, it would be impossible to develop new and better solutions.
Surveys and Other Research Studies
Conducted by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies aiming to develop or improve products for people with MS.
Participate in Genetic Studies
By donating DNA from blood samples, you are helping research that could lead to ending MS forever. Learn more about genetic studies and how you can participate.
Donate to Tissue Banks
People living with MS may hold the key to finding a cure. Learn more about tissue banks and donating brain and spinal cord tissue for researchers studying MS.
COVID-19 Studies Recruiting People with MS
Explore opportunities for participation in research studies seeking to understand the impacts of COVID-19 and how the vaccine can affect people living with MS.
Research Studies: Newly Diagnosed with MS
If you are new to MS, you have the chance to help advancements in MS research. Discover studies researching the earliest stages of MS looking for participants.
Register as a willing MS research participant to facilitate multicenter studies. Initiated by the Consortium of MS Centers.
Share information and ideas for research topics important to you. Each contribution and suggestion brings us closer to faster diagnoses and improved treatments.
Sunday, August 20, 2023
Diet Quality Linked to Less Disability Progression in People with MS
People who reported healthy eating also reported significantly less
disability progression over more than seven years in a study of 603
people with MS. This new study from the University of Melbourne in
Australia is part of an ongoing effort to provide rigorous results on
how lifestyle factors may affect MS outcomes.
Background: Diet
is important in MS, possibly affecting disease activity and immune
function. There is no definitive diet that has been scientifically
proven to be beneficial in changing the course of MS. It is more
challenging to show the benefits of a diet as opposed to a medication –
one reason being that it is difficult to make sure that participants
adhere to the diet. But this kind of research is needed to determine how
people with MS and their health care providers can determine whether
making dietary changes will improve outcomes.
Researchers at the University of Melbourne established the HOLISM study
in 2011 - Health Outcomes and Lifestyle In a Sample of people with MS.
This study is looking at the effects of diet and other lifestyle factors
on MS in 2,500 participants who are assessed every 2.5 years. Previous results showed that better diet quality was linked to increased quality of life in this group.
The Study: The investigators analyzed data from 602
participants in the HOLISM study. Diet quality was assessed using a
questionnaire that reported on the types of healthy and unhealthy foods
eaten. Disability progression was measured using a self-reported
assessment of mobility impairments.
Results: People who reported higher quality diets were
significantly less likely to report disability progression after 7.5
years. Responses relating to higher dairy consumption and eating more
fat had the strongest link to increases in disability. Eating more
fruits/vegetables, fiber, omega-3 fatty acids, and healthier food
choices were also significantly associated with less risk of
progression, but the links were less consistent.
What does this mean? This ongoing study is adding
information needed to help people with MS and their health care
providers understand how diet impacts MS and what changes may improve
outcomes for people with MS. These results in particular show that
maintaining diet quality may be important in reducing disability
progression.
While we do not yet know that a specific diet will help your MS, any
positive changes you make are likely to help your overall health and
well-being.
Learn More…
- Learn how different food plans could affect MS in an article from Momentum Magazine
- Watch a webinar discussing dietary recommendations from the Society’s Ask an MS Expert series
- Get tips and strategies for meal prep from a RealTalk MS podcast
Tuesday, May 16, 2023
“Comorbid” Conditions Appear in People with MS at Diagnosis, but May Not be Treated, Says New Study
A new study in England found that high blood pressure and diabetes were more common in people with MS at the time of their MS diagnosis than in people who don’t have MS, but fewer were on medications used to control these conditions. Identifying and addressing these types of “vascular” conditions as early as possible may improve the course of MS – see below for resources.
- Background: In scientific terms, having more than one chronic medical condition at the same time is called “comorbidity.” There is growing recognition that comorbidities may increase MS progression and detract from an individual’s general health and quality of life. One such comorbidity is high blood pressure (hypertension), which may be as much as 25% more common in people with MS compared to those who don’t have MS.
- This Study: A team of researchers from University
College London and the University of Manitoba identified 12,251 people
with MS and 72,572 people without MS who were matched by age and other
factors in a large database that contains electronic medical records
from general medical practices in England.
They looked at differences between people with MS – specifically at the time of diagnosis – and those without MS, in the prevalence of type 2 diabetes and high blood pressure, and in the use of medications used to combat diabetes, high blood pressure, and high cholesterol. - Results: Type 2 diabetes was 30% more common in people at the time of diagnosis with MS than in those without MS, but 56% fewer were using medications to treat diabetes. More people had high blood pressure at the time of their MS diagnosis, but 66% fewer were using medications to reduce blood pressure. The use of medications to reduce high cholesterol was 63% lower in people with MS.
- The Meaning: This study indicates that comorbidities are common even at the time when MS is first diagnosed, and these potentially serious health conditions may go untreated. Since having comorbidities can significantly worsen a person’s MS disease course, the authors recommend that guidelines be developed to work these considerations into the management of people with MS at diagnosis. For now, people with MS can follow available recommendations (see below) for general health screenings to detect possible comorbidities. Importantly, high blood pressure, diabetes, and high cholesterol are TREATABLE conditions, using medication and lifestyle recommendations.
- Here is a checklist to help you keep track of your general health and address issues that need attention.
- Learn more about healthy behaviors that help to address coexisting conditions.
- Get tips for managing MS and something else (comorbidities) from Momentum Magazine.
- Watch a webinar on “Living well with MS and other health conditions”
Wednesday, April 19, 2023
New Study: Sexual Function and Satisfaction May be Low and Linked to Other Symptoms in People with MS
More
than one third of 702 people with MS and minimal disability had low levels of
sexual function and satisfaction, in a new study reported by researchers at
Brigham & Women’s Hospital. Decreases in sexual function and satisfaction
over time were linked to increased disability and increased symptoms such as
fatigue and depression.
People with MS and healthcare professionals may hesitate to discuss sexual
problems; findings like these highlight how important it is to consider if
these are affecting your quality of life, and if you can improve them.
Background: Sexual arousal begins with the brain sending messages to the sexual organs along nerves running through the spinal cord. If MS damages these particular nerve pathways, sexual response can be directly affected. MS symptoms such as fatigue, spasticity, or mood changes can also contribute to sexual problems indirectly.
This Study: The researchers looked at 702 people with MS who are enrolled in the CLIMB study (Comprehensive Longitudinal Investigation of MS at the Brigham and Women's Hospital), an ongoing study that is following more than 2000 people with MS to figure out what factors affect the course of MS. Participants completed annual questionnaires for several years on quality of life, fatigue and depression. The group included 526 people who self-identified as female and 176 who self-identified as male. The average age was 42, and disability levels were low.
Results: Among the 702 participants, 38% reported low sexual function and 45% reported low sexual satisfaction. Being older and having MS longer were linked to sexual problems. Participants whose satisfaction and function decreased over time were more likely to have increased fatigue, depression, or disability over that time period as well. Although all aspects of quality of life were associated with sexual function and satisfaction, there were differences between males and females in the strength of these connections. For example, in women, low sexual satisfaction was strongly linked to fatigue. In men, low function was strongly linked to emotional factors.
Why This Matters: This study highlights the importance of discussing sexual problems with healthcare providers, even early in the course of MS before having physical disability. Seeking treatments for potentially modifiable symptoms such as depression or fatigue may help increase sexual function and satisfaction.
This
study:
“Sexual Problems in MS: Sex Differences and Their Impact on
Quality of Life” by Drs. T. Kaplan , T. Feldman , B. Healey , M.
Behn , B. Glanz , and T. Chitnis, is published in Multiple Sclerosis and
Related Disorders (Published:March 26, 2023).