International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

Disease Responsible for 1 out of 3 Strokes in Young People

1 out of 4 Recurrent Miscarriages

Goal to Find a Cure and Heighten Awareness About this Devastating Disease

Miami, Nov. 1, 2010 – Antiphospholipid Syndrome (APS) is a condition that may be responsible for up to one-third of strokes in people under age 50, up to one-fifth of all cases of blood clots in large veins, and one-quarter of recurrent miscarriages. Nonetheless, relatively few randomized clinical trials have been conducted involving people with APS, and those completed have included small numbers of participants.

To stimulate an international discussion on this topic, the APS Clinical Research Task Force is hosting a summit titled, “Breaking Out of the Box,” in Miami from Nov. 2-4, 2010. The task force, co-chaired by Hospital for Special Surgery physician-scientists Doruk Erkan, M.D., and Michael D. Lockshin, M.D., was formed as a result of the 13th International Congress on Antiphospholipid Antibodies in April 2010.

The two dozen summit attendees will include experts in the field of APS research from around the world, including Australia, Brazil, Italy, the Netherlands, the United Kingdom and the United States.

“APS research has not progressed substantially over the past 25 years, after researchers developed a simple blood test to identify the antibodies,” said Dr. Lockshin, director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery in New York City. “As a result, we are gathering rigorous thinkers to identify critical APS research questions and establish the process for moving forward in a coordinated, strategic international effort.”

APS involves the formation of abnormal blood clots in arteries and veins, which puts people at risk for stroke and pregnancy complications. Blood clots form because the immune system mistakenly produces antibodies against phospholipid-binding plasma proteins (aPL).

APS can be diagnosed through repeated blood testing. While no cure exists and the cause is still unclear, treatment includes long-term blood thinning to prevent clots from forming. This condition can occur in conjunction with other autoimmune diseases, such as systemic lupus erythematosus and rheumatoid arthritis.

Several major issues have slowed the progress of APS clinical research, such as the fact that there are few standardized tests to detect the antiphospholipid antibodies, study participants have a range of symptoms, the biology underlying the condition is not completely understood, and smaller efforts have not recruited enough study participants.

“There is an urgent need for a true international collaborative approach to design and conduct large-scale clinical trials involving people who have aPL,” said Dr. Erkan, clinical co-director of the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. “At this summit, we hope to stimulate dialogue about this condition and formulate a solid research question from which to generate future clinical trials that are feasible, interesting and relevant.”

The summit will include presentations about transforming and globalizing APS research, lessons learned from APS research registries, and several group brainstorming sessions for identifying, refining and finalizing research questions. Scientists will conclude by setting a timeline for critical tasks to complete in order to proceed with clinical studies.

The conclusions of the APS Clinical Research Task Force and the preliminary outcomes from the Miami summit will be presented at the upcoming American College of Rheumatology annual scientific meeting in Atlanta, in poster session A on Nov. 8 from 9 a.m.-11 a.m. as Abstract #6, Antiphospholipid Syndrome (APS) Clinical Research Task Force (CRTF) Report.

About Hospital for Special Surgery Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 3 in rheumatology, and No. 16 in neurology by U.S.News & World Report (2010-11), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at http://www.hss.edu/.

Phyllis Fisher
fisherp@hss.edu
212-606-1197

Tracy Hickenbottom
hickenbottomt@hss.edu
212-606-1197

###

Sent out by the APS Foundation of America, Inc

Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org/

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, hss, hospital for special surgery, association

2009 H1N1 Flu (referred to as “swine flu” early on) and Seasonal Flu Information for People with Inflammatory Arthritis or Rheumatic Disease

October 15, 2009, 11:00 AM ET

How does arthritis affect how I respond to the flu?

People with certain types of arthritis, called inflammatory or systemic arthritis or autoimmune rheumatic disease, have a higher risk of getting flu-related complications, such as pneumonia. Inflammatory arthritis affects the immune system which controls how well your body fights off infections. Also, many medications given to treat inflammatory arthritis can weaken the immune system. People with weakened immune systems are at high risk for getting more severe illness and complications such as hospitalization with the flu. Rheumatoid arthritis and lupus are the most common types of inflammatory arthritis.

People with osteoarthritis, also called degenerative arthritis, are likely not at increased risk of complications from the flu unless they also have other high-risk conditions for flu such as asthma, diabetes, heart disease, or cancer.

If you have one of these types of inflammatory arthritis, you may be at high risk for complications from the flu. You should discuss your risk for complications from the flu with your healthcare provider.

Types of Inflammatory Arthritis

Rheumatoid arthritis (RA) Systemic lupus erythematosus (SLE) Psoriatic arthritis Anti-phospholipid syndrome Polymyalgia rheumatica Systemic sclerosis/scleroderma Spondyloarthropathies Sjögren’s syndrome Polymyositis/dermatomyositis Vasculitis (e.g giant cell arteritis) Necrotising arteritis Sarcoidosis Polyarteritis nodosa

If you are taking one or more of these medications for your arthritis, you may be at high risk for getting the flu or complications from the flu. Note: This list applies to medications that are ingested or injected and does NOT include medications that are applied to the skin such as creams and ointments. Your healthcare provider can clarify if the medications that you take weaken the immune system.

Arthritis medications that weaken the immune system

Steroids (corticosteroids) taken by mouth or intravenously, not applied to the skin or injected into a joint. prednisone (Deltasone, Orasone, Prednicin-M, Sterapred) prednisolone (Prelone) methlyprednisone (Medrol) hydrocortisone (Cortef, Hydrocortone) dexamethasone (Decadron, Hexadrol)) cortisone acetate (Cortone) betamethasone (Celestone) DMARDs (disease-modifying antirheumatic drugs) methotrexate (Rheumatrex, Trexall) azathioprine (Imuran, Azasan) hydroxychloroquine (Plaquenil) leflunomide (Arava) sulfasalazine (Azulfidine) minocycline (Minocin, Dynacin) cyclosporine (Sandimmune, Neoral, Gengraf) mycophenolate mofetil (Cellcept) gold (Auranofin, Ridaura, Myochrysine) chlorambucil (Leukeran) cyclcophosphamide (Cytoxan) Biological response modifiers (biologics) etanercept (Enbrel) infliximab (Remicade) adalimumab (Humira) anakinra (Kineret) abatacept (Orencia) rituximab (Rituxan) tacrolimus (Prograf, FK-506, fujimycin)

What are the symptoms of the flu?

The symptoms of 2009 H1N1 flu virus in people are similar to the symptoms of seasonal flu and include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills, and fatigue. Some people may have vomiting and diarrhea. People may be infected with the flu, including 2009 H1N1, and have respiratory symptoms without a fever.

How can I avoid getting and the flu or giving the flu to others?

The flu is spread from person-to-person by coughing or sneezing by people with influenza. Sometimes people may become infected by touching something – such as a surface or object – with flu viruses on it and then touching their mouth or nose. You can take simple actions to protect yourself and others from getting the flu:

• Get a seasonal flu shot now and the 2009 H1N1 flu shot when it becomes available.
• Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
• Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
• Avoid touching your eyes, nose, or mouth. Germs spread this way.
• Try to avoid close contact with sick people.
• If you are sick with flu-like illness, seek medical care early. Your health care provider can determine if you need to be treated with antiviral medication.
• Keep away from others as much as possible to keep from making others sick. CDC recommends that you stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine.

Is there a vaccine against the 2009 H1N1 flu virus and who is it available for?

Yes. A vaccine for the 2009 H1N1 flu has been developed and will be available beginning mid-October 2009. People with inflammatory arthritis within any of the following prioritized groups are recommended to receive the 2009 H1N1 vaccine when it first becomes available:

• Pregnant women
• People who live with or care for children younger than 6 months of age
• Healthcare and emergency medical services personnel
• Persons between the ages of 6 months and 24 years old
• Persons between the ages of 25 and 64 years old who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems (including with inflammatory arthritis)

Persons age 65 or older (including those with inflammatory arthritis) are not included in these prioritized groups because current studies indicate that the risk for 2009 H1N1 flu infection among persons age 65 or older is less than the risk for younger age groups. We do not expect that there will be a shortage of 2009 H1N1 vaccine, but availability and demand can be unpredictable. Once the demand for vaccine among the younger groups has been met, however, people age 65 or older with inflammatory arthritis should receive the 2009 H1N1 flu shot.

Do I need to get a flu shot?

Yes, CDC recommends certain persons with weakened immune systems, which includes people with inflammatory arthritis, get flu shots.
People with inflammatory arthritis should get—

• A seasonal flu shot every year. These are available beginning in September.
• The new 2009 H1N1 flu shot when available (see question above). These will begin to be available in mid-October 2009.

People living with inflammatory arthritis should get the "flu shot"— an inactivated vaccine (containing fragments of killed influenza virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people inflammatory arthritis.

The other type of flu vaccine — nasal-spray flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine)—is not currently approved for use in people with inflammatory arthritis. This vaccine is made with live, weakened flu viruses that do not cause the flu). LAIV (FluMist®) is approved for use in healthy people 2-49 years of age.

What should I do when I am sick?

• If you develop flu-like symptoms contact your healthcare provider.
• Avoid contact with others. You should stay home and avoid travel, including not going to work or school, until at least 24 hours after your fever is gone except to get medical care or necessities. Your fever should be gone without using fever-reducing medications.
• If you leave the house to seek medical care, wear a facemask, if available and tolerable, and cover your coughs and sneezes with a tissue.
• Do not stop taking any medicine you take for your arthritis unless told to do so by your physician.
• Seek medical attention early if you develop symptoms of the flu. Treatment is available for persons with severe disease and those at high risk for complications. Persons with inflammatory arthritis are considered high risk for complications from the flu; therefore, your health care provider may choose to prescribe antiviral medications for you if you get the flu.
• If you are exposed to someone who has flu, consult your health care provider. They may prescribe medication to help prevent you from getting the flu or watch you closely to see if you develop flu symptoms.

For more information:

H1N1 Flu: General information
http://www.cdc.gov/h1n1flu/general_info.htm

Arthritis Foundation Flu: What People with Arthritis Should Know*
http://www.arthritis.org/the-flu.php

H1N1 Advisory for People with Lupus*
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2681&zoneid=99

Lupus and Influenza Vaccines*
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2688&zoneid=527

* Links to non-Federal organizations are provided solely as a service to our users. Links do not constitute an endorsement of any organization by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization Web pages found at this link.

http://www.cdc.gov/h1n1flu/arthritis.htm


Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, H1N1, flu, swine

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

FOR IMMEDIATE RELEASE

Date: 06/03/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!

This disorder threatens to become more common than Lupus and Multiple Sclerosis.

The APSFA is sending petitions to several states to make June APS Awareness Month. The APSFA will be attending conferences, medical seminars, grand rounds and health fairs to share the patient perspective and provide awareness of APS throughout the month of June and also encouraging the community to Get in the Flow. Individual and APSFA fundraisers will be occurring throughout the country to help promote APS awareness and help support the mission.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

The APSFA is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: www.apsfa.org Email Address: apsfa@apsfa.org

June is APS Awareness Month!

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

For more information click the graphic above!

Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

written by the APS Foundation of America, Inc. Enjoy!!! :)

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

We still are looking for articles, book reviews, etc...please email us for more information!

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

By: Gale McCarty, MD, FACR, FACP. Hydroxychloroquine (HCQ, or its trade name-Plaquenil) has a long and honored history of use in systemic lupus erythematosus (SLE) as a general medication to decrease activity of the immune system and decrease symptoms. For years it has been approved for use by the FDA for lupus and rheumatoid arthritis, and has been used most frequently for skin and joint manifestations. It is considered a mainstay of therapy for any patient with SLE by many lupus experts and rheumatologists. It has many mechanisms of action, some related to decrease in the activity of the immune system, and some related to effects on blood clotting mechanisms. HCQ belongs to the class of drugs call anti-malarials, which includes Chloroquine and Atabrine. (This does not mean that anyone thinks that SLE or APS is caused by the agent that causes malaria-like most discoveries in medicine, it was the chance observation that patients with some autoimmune diseases who got anti-malarial drugs to prevent malaria when traveling to likely areas of infection noted their symptoms improved on HCQ). One of the most complete and excellent reviews of all the literature on the anti-malarials to which all patients and their physicians are directed is Dr. Dan Wallace’s Chapter 59 in the Wallace-Hahn Dubois’ Lupus Erythematosus textbook. Another excellent review on APS therapy in general has been published by Dr. Robert Roubey.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

June is APS Awareness Month: Get in the Flow!

June is APS Awareness Month: Get in the Flow!

The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Machines.

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Machines.

by: Stephan Moll, MD. A superb way to monitor INRs (International Normalized Ratio) in patients on oral anticoagulants who do NOT have antiphospholipid antibodies (APLA) is though use of “point of care instruments”, where the INR is tested on blood from a finger stick. This method gives fast results and is used by many physicians’ offices and by some patients at home. However, in patients with APLA on oral anticoagulants these instruments may give inaccurate readings.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

Are Natural Alternatives to Warfarin Safe and Effective?

Are Natural Alternatives to Warfarin Safe and Effective?

Written by: Randy Rauber, Pharm.D Candidate
University of Colorado Health Sciences Center. Reviewed by: Al Lodwick, RPh, MA. Is there any evidence to support the use of herbal supplement “blood thinners” in patients with antiphospholipid antibody syndrome (APS) as natural alternatives to Warfarin?

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

MO-KAN Spreads APS Awareness

MO-KAN Spreads APS Awareness

Written by Dana Stuart. “Mo-Kan” is a phrase commonly used in the Missouri-Kansas region to describe various missions or goals that Missouri and Kansas businesses and residents CAN accomplish together. Frequently used for public service announcements, advertisements, and other miscellaneous uses, “Mo-Kan” has become the unofficial slogan for several alliances, which have formed for some very worthy causes. Now “Mo-Kan” spreads APS Awareness!

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

APS in the Community

APS in the Community

written by Seren Estrada. On April 22nd the APSFA made an appearance at the annual March of Dimes WalkAmerica event in Springfield, Virginia.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

June is APS Awareness Month

June is APS Awareness Month

The Proclamation is a call to action for governments around the world to increase their financial support for APS research, awareness and patient services.

Each year, the APS Foundation of America, Inc (APSFA) will revise the Proclamation to reflect the emerging issues that people with APS around the world must face every day. The Proclamation serves to give a single voice to all individuals affected by this devastating and debilitating chronic disease.

Please join the APSFA in urging your government to adopt and make June APS Awareness Month.

WHEREAS, The APS Foundation of America, Inc. has declared June as National Antiphospholipid Antibody Syndrome (APS) Awareness Month and is educating the public and medical community about this clotting disorder and is urging people to "Get in the Flow”; and

WHEREAS, APS is the major cause of young strokes, many miscarriages, both arterial and venous thrombosis, and heart attacks. It has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. In obstetrics, it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS; and

WHEREAS, the APS Foundation of America, Inc is working to bring a national attention to APS as a common factor in multiple miscarriages, thrombosis, young strokes, and heart attacks is vital in order to bring a joint effort to research, funding, early detection, and eventually, prevention and cure for APS; and

WHEREAS, the mission of the APS Foundation of America, Inc. is to offer understanding and support to individuals, family, friends, and care givers of APS; to offer information about and education on APS; to support research regarding APS by keeping the latest information available and referring people to such agencies who do research; to raise funds to provide information and education through public donations, grants, fundraisers, sponsorships, and bequests; and to bring national focus to APS in the United States.

NOW, THEREFORE, BE IT RESOLVED that June is hereby designated as APS AWARENESS MONTH on which the APS Foundation of America, Inc call for increases in public and private sector funding for medical research on APS, targeted education programs for health professionals, patients and the public, and worldwide recognition of APS as a significant public health issue.

Proclaimed This Day, 1 June 2007