The following is a listing from SAA of active spondylitis research opportunities, including those from third parties. SAA is not affiliated with any third party studies listed here, and is sharing them as a service to the community.
Contact us at Research@spondylitis.org
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The Children’s Hospital of Philadelphia and 20 partnering institutions across the US have an exciting opportunity for patients and families to partner on a study answering questions about children and adolescents with spondyloarthritis/enthesitis-related arthritis who are currently doing well on a TNF inhibitor medication (Humira, Enbrel, Remicade, Cimzia, or Simponi).
Have you ever wondered about the following topics?
Can medications be stopped if disease is inactive?
How long will remission last if I/my child stop medication?
To answer these questions, the team needs to partner with families and individuals like you. Here’s a brief video about the study created by the parent and patient partners
This randomized pragmatic trial will generate knowledge about strategies used to de-escalate tumor necrosis factor inhibitor (TNFi) therapy in patients with juvenile spondyloarthritis with sustained inactive disease and are treated at one of the 21 participating pediatric healthcare systems. Find the closest participating site here!
You may be eligible to participate in this study if you or your children meet the following conditions:
This open label study will be conducted in the setting of routine clinical care, where subjects will be randomized to one of three alternative treatment approaches, complete study questionnaires at every visit and have an opportunity to participate in two optional blood draws and MRI scans (if eligible) to answer important questions related to medication changes
Subjects will be seen every 3 months through the active study endpoint of 12 months. After subjects have followed their treatment assignment for 12 months, those who have not flared may modify their treatment regimen as per shared decision making between themselves and the treating physician. All participants will be monitored for 24 additional months for long-term outcomes after the intervention period.
More information can be found on the Clinical Trials or the BACK-OFF JSpA website.
The Spondylitis Association of America, in partnership with Sanguine Biosciences, is reaching out to raise awareness about an at-home research opportunity for patients diagnosed with axial spondylarthritis.
What is the goal of the at-home research?
The goal of this research is to enhance their understanding of axial spondylarthritis, in support of developing new diagnostic and treatment options for patients living with the condition.
Who can participate?
You may qualify to participate if you:
What would I have to do to participate?
Patients who qualify can support research by providing a one-time blood donation from the comfort of their own homes. As a thank you for participating, you will receive up to a $100 prepaid gift card after the collection is complete.
To learn more or sign up, visit Sanguine Biosciences or call (617)-765-1394 to speak with a research coordinator and see if you qualify.
ClinicalTrials.gov ID NCT05635266
Sanguine Biosciences is conducting a study to advance treatment and diagnosis of ankylosing spondylitis. The study involves a one-time blood donation collected from the comfort of participants’ homes.
You may qualify to participate if you:
The findings from this research will be used to help inform the development of more effective and personalized approaches to care for individuals living with ankylosing spondylitis. Participants will be compensated with up to a $100 prepaid gift card upon completion of the at-home blood donation process.
For more information or to determine eligibility, visit Sanguine Bio or contact a research coordinator at (617) 765-1394. You may also visit The Clinical Trials Study Page.
ClinicalTrials.gov ID NCT05635266
This is a patient research registry aimed at evaluating the effectiveness of a comprehensive, root-cause medical approach (“AndHealth program”) for autoimmune disorders. This approach involves a combination of pharmacological and non-pharmacological therapies offered under the care of a licensed physician with the support of health coaches. While protocol guidance is provided, the therapeutic approach is personalized to the individual needs of patients. The autoimmune disorders of focus in this registry include rheumatoid arthritis, psoriatic arthritis, psoriasis and ankylosing spondylitis. A variety of validated labs, patient-reported outcomes, and medication usage will be assessed among participating patients over a period of up to five years to evaluate the long-term effectiveness of this approach.
For more information, visit The Clinical Trials Study Page.
ClinicalTrials.gov ID NCT05883371
This study aims to collect information on rheumatology patients’ dietary habits, autoimmune disease activity, dietary changes, disease symptom improvements, and perceptions on their dietary habits and how it affects their autoimmune disease. The main objective is to see if rheumatology patients change their dietary habits after their diagnosis of an autoimmune disease and if it subjectively improved their disease symptoms. It will also look at rheumatology patients’ expectations for their rheumatologist when it comes to dietary advice and what resources they used to choose their new dietary habits. The study also seeks to measure the interest that rheumatology patients have in pursuing dietary changes as a means of controlling the symptoms of their autoimmune disease. It is expected that patients who changed their eating habits to healthier diets such as a Mediterranean diet would report less severe autoimmune disease symptoms. There are limited dietary recommendations for the management of many rheumatological diseases, so this study seeks to assess rheumatology patients’ willingness to try dietary modifications, what improvements they had, and why they decide to make these changes in light of limited information.
For more information, visit The Clinical Trials Study Page.
ClinicalTrials.gov ID NCT06339957
Social determinants of health (SDoH), defined by the World Health Organization as “the conditions in which people are born, grow, work, live and age and the wider set of forces and systems shaping the conditions of daily life” are estimated to be responsible for nearly 90 percent of a person’s health outcomes. SDoH are key contributors to racial, ethnic and socioeconomic disparities in care, healthcare access and health outcomes. The goal of this clinical trial is to identify patients with inflammatory arthritis or with a systemic rheumatic condition with arthritis who may respond to the simplest and least expensive intervention to address their SDoH-related needs- a tailored list of resources, those who benefit from a community-based resource specialist to help address specific needs, and those who require a nurse-trained navigator to help both coordinate the services provided by the community-based specialist, and their medical and mental health care and needs. The main questions the clinical trial aims to answer are:
For more information, visit The Clinical Trials Study Page.
ClinicalTrials.gov ID NCT05715463
A rheumatology biorepository will be created to permit comparative analyses between the rheumatic diseases in order to increase the understanding of disease pathogenesis. Patients seen at Yale clinics diagnosed with rheumatic diseases are invited to participate in this study. These rheumatic diseases include, but are not limited to: adult onset Still’s disease, ankylosing spondylitis, psoriatic arthritis, reactive arthritis, antiphospholipid syndrome, systemic lupus erythematosus, Behcet’s disease, dermatomyositis, polymyositis, giant cell arteritis and other vasculitides, Lyme’s disease, mixed connective tissue disease, polymyalgia rheumatica, rheumatoid arthritis, sarcoidosis, systemic sclerosis (scleroderma), Sjogren’s syndrome, and undifferentiated connective tissue disease.
For more information, visit The Clinical Trials Study Page.
ClinicalTrials.gov ID NCT04402086
Do you think your diagnosis of ankylosing spondylitis was delayed in some way? Did it take longer than you expected to get the diagnosis and be treated?
We are a group of researchers at RAND leading a research study to learn more about why and how delays in diagnosing AS happen, how such delays impact patients, and to find ways to improve the diagnostic process. We would like to speak with people who were diagnosed with AS in the last 12 months, and who believe their diagnosis was delayed in some way, potentially creating more challenges for you and your care. We would like to speak with you about your diagnostic journey in a one-on-one virtual research interview, scheduled at your convenience. You will receive a gift card as a thank you for your time. All responses will be kept confidential.
Please click this link to learn more and express your interest in participating.
You can also email Sangeeta Ahluwalia, Lead Investigator, at sahluwal@rand.org if you have further questions or want to participate.
RAND IRB Approval # 2023-N0372
The below are observational studies recruiting pregnant women. As such, participants will not be asked to take any medications or vaccines and will not be required to change their daily routine. The researchers will interview the women, tracking their pregnancy, as well as the health of the baby.
These observational studies are being conducted by MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists (OTIS). These studies will collect information from pregnant women during their pregnancies, as well as about the baby’s health after delivery.
These studies are overseen and monitored by the Institutional Review Board (IRB) of the University of California, San Diego.
Understanding the Effects of Ankylosing Spondylitis and Psoriatic Arthritis in Pregnancy
Study Requirements:
To enroll and obtain further information about the two different studies please visit the below page applicable to you:
You will also find these studies listed on Clinical Trials here.
Understanding the Effects of Medication taken during in Pregnancy
Many women need to take medication during pregnancy to properly manage their health. Researchers are currently recruiting participants to help better understand the effects of the following medications; certolizumab pegol (Cimzia), apremilast (Otezla), and ustekinumab (Stelara) in pregnant women.
Study Requirements:
To enroll and obtain further information about the two different studies please visit the below page applicable to you:
You will also find these studies listed on Clinical Trials here.
Researchers at Boston University are conducting a survey to help learn about how people with ankylosing spondylitis and related conditions choose medications. The survey will take 15-20 minutes to complete. Those who finish the survey may win one of five $50 gift cards.
You may be eligible to participate if:
This study will help researchers understand what is important to people with spondyloarthritis in choosing between medications. Once many people have shared their opinions, the results will be used to summarize the overall pros and cons of different medications. We hope the results of this study will make it easier for people with spondyloarthritis to gain access to medications that work well, and fit with each persons’ preferences.
Study PI: Dr. Maureen Dubreuil
IRB Approval: Boston University (H-34259)
For more information, and to take this survey, please visit SpondMedSurvey.
Please, contact Dr. Dubreuil at 617-353-8667 with any questions or concerns about this survey. You may also call 617-358-5372 or email medirb@bu.edu to talk with someone at the Boston Medical Center and Boston University Medical Campus IRB.
Note: Dr. Dubreuil received the SAA/Bruckel Early Career Investigator Award in SpA in 2018. Learn more here.
(The IRB is a group that helps monitor research. You should call or email the IRB if you want to find out about your rights as a research subject or if you wish to talk to someone who is not part of the study about your questions or concerns.)
This study will evaluate the natural history of spondyloarthritis (SpA) in children and adults. Researchers will study early signs and symptoms of axial spondyloarthritis to better understand the cause and progression of this disease, and in addition, compare genetic data of patients with that of healthy family members’ to help identify the genes involved in SpA, and their functions.
Successful completion of these combined analyses will allow rheumatologists to better recognize early SpA with axial involvement, particularly in children, and improve our understanding of disease cause, mechanisms involved, and progression.
Participants enrolled in this study will undergo physical examination, imaging studies, have family history taken, as well as have laboratory evaluations completed. Participants may also be evaluated for SpA related symptoms outside the joints and spine, as needed.
You may qualify to participate if you:
Study Design (What you can expect as a participant)
For more information, visit The Clinical Trials Study Page.
The study is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Study location:
National Institutes of Health Clinical Center
9000 Rockville Pike
Bethesda, Maryland 20892
For more information, or to enroll, please contact
April Brundidge, R.N. (301) 443-5407 brundidgea@mail.nih.gov
Robert A. Colbert, M.D. (301) 443-8935 colbertr@mail.nih.gov
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