The Latest Edition
Below, you’ll find the latest issue of FORWARD magazine, filled with helpful information, patient stories, and in-depth information about the latest research being performed using FORWARD data.
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This edition has a wonderful personal story from Co-Director Dr. Kaleb Michaud on how rheumatoid arthritis has affected his family and how research is important to him not only for work, but personally. This edition also features an update on the International Dupuytren Data Bank (http://dupuytrens.org/), information on the organization MotherToBaby (http://mothertobaby.org/), and updates on other projects and the latest research from the NDB.
This edition has an update from Co-Director Kaleb Michaud, PhD discussing how participants are the key to NDB research, questionnaire changes, and personal connections. Research news from EULAR, NDB projects, and the Arthritis Internet Registry (AIR). And as always, information about NDB Questionnaires and Primary Diagnosis, the online questionnaire and patient reports, and ways to help out the NDB.
This edition has an update from the Directors of the NDB discussing the new Ginger.io smart phone app, news about the Arthritis Internet Registry (AIR), as well as an update about the fibromyalgia survey analysis currently underway. News about NDB Questionnaires and Primary Diagnosis, changes to the Lupus Questionnaire, Latest research tidbits, and ways to help out the NDB are also in this Newsletter.
This edition of the NDB Research Newsletter has updates on currently published research from the data collected in the NDB along with information on future studies. The Athritis Internet Registry is pleased to announce the addition of Dr. Peter Gregerson to the team. The newsletter also has information about the NDB.
This edition of the NDB Newsletter has an amazing personal story in the Notes from the Directors section written by Dr. Kaleb Michaud describing the impact of growing up with juvenile rheumatoid arthritis, and later how it has shaped his desire to aid others who live with arthritis. This edition also features another personal account written by NDB participant Fara Hentsch, detailing how she manages her rheumatoid arthritis and tips for incorporating exercise into your daily routine.
Featured in this edition of the Newsletter Notes from the Directors section discusses the rise of patients dealing with Gout, thus the creation of a new custom questionnaire that the NDB will use to address the specific flare cycle gout patients deal with. Also, the NDB has teamed up with DatStat to create an easier to use online survey questionnaire.
Dr. Frederick Wolfe discusses in the Notes from the Director section the importance of counting symptoms (from those that are common to those that are seen less often) to better understand how your illness affects you. Latest NDB research updates are also presented, as well as short bios on some of the researchers involved in the Arthritis Internet Registry (AIR).
In this NDB Research Newsletter, Dr. Frederick Wolfe talks about the results of a recent study where researchers from the NDB, the University of North Carolina, and Duke University looked at how arthritis-related treatments might reduce the risk of heart attacks. The importance of Health Literacy (HL) is also discussed, as well as how women of reproductive age with RA need to be aware of what medications they are taking and how that can affect pregnancy.
If you have arthritis or some of the similar conditions we ask about, you know that these are chronic problems. Research doctors want to know how people with these conditions are doing – how well treatments work on average. But you and your doctor might be more interested in how you, yourself, are doing.
This edition offers something for everyone. If you have lupus or RA, you’ll be happy to know that we have just published a paper on the safety of hydroxychloroquine, more commonly known by its trade name “Plaquenil.” Plaquenil is widely used in both of these illnesses. It’s also used to treat malaria. But there is one problem with Plaquenil. It can cause damage to the retina. In fact, it can cause blindness. But how often do these problems occur? Pretty much, doctors haven’t known.
The January 2010 edition of the NDB Newsletter has an interesting editorial from Dr. Frederick Wolfe, the Director of the NDB, where he discusses the importance of cost-effectiveness studies in health care, outlining the pros and cons of treatment measures in relation to the cost and current knowledge of medicine. Data accumulated by NDB participant questionnaire answers have led to a publication on cost-effectiveness in the Annals of Internal Medicine.
The Notes from the Director section dives into what makes up a Fibromyalgia diagnosis, and how the NDB has worked with almost a thousand patients and over 50 physicians to make headway in this area in a recent study. New treatments for those with RA are now available and mentioned in this issue, as well as an article on how the NDB distinguishes between multiple conditions.
This edition of the Notes from the Director editorial discusses the importance of drug treatments to be effective and affordable, but as pointed out in a few examples from Dr. Frederick Wolfe, sometimes supplements and drugs from pharmaceutical companies are not quite as advertised. The latest in NDB research activities discusses a new Lupus questionnaire, a new fibromyalgia study the NDB is coordinating, and some news for Plaquenil users.
Dr. Frederick Wolfe dives into NDB participant questions in the Notes from the Director section, addressing comments in regards to how NDB surveys help out treatment outcomes, as well as providing some exciting news about the NDB’s recent work in fibromyalgia research concerning cost of medical care. This edition of the NDB Newsletter also has some great information in regards to total join replacement (TJR) surgeries; who gets them, what influences them to do so.
The January 2008 edition of the NDB Newsletter discusses what remission is, and why rheumatologists are so interested in whether new treatments are bringing patients closer to it. Dryness symptoms and RA, the importance of weight loss and knee pain are discussed, as well as a Meet the Participants article are all featured in this edition.
The July 2007 edition of the NDB Newsletter features an article by Dr. Frederick Wolfe discussing how the NDB comes about knowing how folks with varying types arthritis are able to function, looking at treatment effectiveness, side effects, and costs of treatment. This newsletter also has articles about heart attacks and arthritis medications, anti-TNFs, and a new project looking at lupus in the community called SLEC.
Points of interest in the January 2007 edition of the NDB Research Newsletter starts with a new project the NDB is working on called RALLY, which looks at assessing the safety and effectiveness of a new biologic treatment for RA called Orencia (generic abatacept.) NDB responses from a recent questionnaire has lead to a publication on patient thoughts on what they did and did not like about medical treatments. Fibromyalgia quality of life, and news about former Vioxx users are also featured articles.
Dr. Frederick Wolfe discusses the importance of understanding the risks and benefits of treatments for arthritis conditions. He illustrates this point talking about a new publication in JAMA discussing the risk of developing cancer and infections from taking Remicade TM and Humira TM, and how the NDB is also looking studying the risk of malignancy and infection. Plus, read about how the NDB is celebrating 25 years of research, and how the NDB came to be!
This edition of the NDB Research Newsletter features an article from the Director Dr. Frederick Wolfe on how the NDB took fatigue and pain questions and created a fatigue-pain scale called the Symptom Intensity Scale (SIS), and how this helps to define and look at fibromyalgia symptoms.
Dr. Frederick Wolfe touches on some of the fundamental differences in several rheumatic diseases (RA, OA, Fibromyalgia, Lupus) in terms of peoples function, pain, fatigue, and overall severity of disease. You can also find in this NDB Newsletter for July 2005 are 2 editorials from NDB participants, each talking about their specific disease and life experiences. The latest in NDB research news is also available.
The January 2005 edition of the NDB Research Newsletter Notes from the Director editorial takes on the Vioxx issue; is the FDA to blame for the delay in recognizing the risk of heart attacks with Vioxx use? How does an organization go about detecting side effects? What does it mean if an event is rare? These points are all covered in Dr. Wolfe’s editorial. Other items to look for are recent research results the NDB has presented at the latest American College of Rheumatology (ACR) meeting.
In the Research Notes from the Director section of the July 2004 edition of the NDB Newsletter, Dr. Wolfe talks about how the NDB research questionnaires have been translated into Spanish, French, and Portuguese, and are actively working on collaborations with 8 other countries! Research highlights in this edition touch upon sleep, current RA therapies and heart problems, and news regarding biologic therapies and RA.
Articles that can be found in the January 2004 edition of the NDB Newsletter include an explanation of how NDB participant questionnaire data contributes to research presentations at the American College of Rheumatology (ACR) Annual Scientific Meeting, and how the ACR meeting works. For 2003, 85% of all NDB abstracts were accepted, with 5 podium presentations!
The July 2003 edition of the NDB Arthritis Research Newsletter has an editorial from Dr. Frederick Wolfe discussing NBD data presented at 2 meeting of the FDA: the first on results for lymphoma (a type of lymph cancer) and the second on safety data with Arava. Other articles found inside include the NDB looking at the costs of medications, an introduction to what the CHORD Fellowship Program is, and some answers to frequently asked questions regarding HIPAA.
The January 2003 edition of the NDB Arthritis Research Newsletter features some research updates regarding NDB participant data: RA treatment does more than relieve symptoms, direct medical costs and the cost of disability of RA are addressed, and how the NDB presented more research results than any other U.S. university or research group. Also, the NDB will be initiating a clinical research study for the treatment of osteoarthritis of the knee to determine the effectiveness of Glucosamine / Chondroitin.
Dr. Frederick Wolfe announces in the Notes from the Director section of the July 2002 NDB Newsletter that the NDB and colleagues at Harvard University has just published in the Lancet Medical Journal that methotrexate increased life expectancy among persons with RA who used that treatment. The Costs of Medical Care and Arthritis is addressed in the NDB patient population, thanks to the commitment of NDB participants completing questionnaires. Also, Dr. Wolfe takes the time to address questions from NDB participants.
The January 2002 edition of the NDB Arthritis Research Newsletter is proud to announce that the NDB is going on the Internet! How to participate, concerns about privacy, and the advantage of entering data on the web are discussed. Featured articles discuss approval of Kineret use for those with RA and Bextra use for inflammation and pain for those with RA, OA, and Fibromyalgia.
Featured in the July 2001 NDB Newsletter are articles looking at: is there any increased risk of tuberculosis (TB) in those with RA? (this is not seen to be true in the NDB patient population), information on a promising new osteoporosis drug that may help bone growth, as well as some background on the NDB staff you communicate with and why!
With the rollout of the January 2001 NDB Arthritis Research Newsletter, it is time to celebrate and recognize that the NDB has reached its silver anniversary (25 YEARS!) in conducting databank research! Stories on what is means to have arthritis, the cost of fibromyalgia, and the announcement of starting a new fibromyalgia databank is included inside this PDF.
The July 2000 edition of the NDB Newsletter features an article on how the FDA is deciding whether to approve a new biologic agent, IL-1ra that will be referred to by the drug company as Kineret, and Dr. Wolfe talks about potential impact of this drug and what exactly are “cytokines”. The latest research results from the NDB are also discussed, as well as the importance of long term studies and why NDB participants are so incredibly invaluable for these long term studies.
In this January 2000 edition of the Arthritis Research Newsletter, the feature topic that is covered is that Remicade and Prosorba are both approved by the FDA for the treatment of RA – learn the ins and outs in the attached PDF. Research at the ACR section has an article about how Glucosamine reduces progression of knee osteoarthritis, an article about a controlled study comparing Arthrotec and acetaminophen for OA in the hip and knee, an article looking at combing folic acid with methotrexate in RA, info on Triple Therapy use in RA, and a look at methotrexate vs. arava.
The July 1999 edition of the Arthritis Research Newsletter features a discussion about anti-inflammatory drugs, specifically what NSAIDs are and how they interfere with an enzyme called COX, and the advent of Celebrex and Vioxx into the conversation. Arava and Enbrel are also discussed, as well as information on the latest NDB research presented at the American College of Rheumatology (ACR) meeting.
Items of interest found in the January 1999 edition of the NDB Arthritis Research Newsletter include the introduction of the drugs on the market, specifically Celebrex, Arava, and Embrel. Background on the NDB and its endeavors for using longitudinal study data to better understand and help those with arthritis is discussed in this issue, as well as what is collected by the NDB, how that data is used, as well as whom to contact with questions.