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Environmental Factor

Environmental Factor

Your Online Source for NIEHS News

June 2017

International myositis conference brings together researchers, patients

NIEHS scientists helped organize the 2nd Global Conference on Myositis, welcoming researchers, patients, and support groups.

NIEHS scientists helped organize the 2nd Global Conference on Myositis (GCOM 2017), which brought together myositis researchers, patients, and support group representatives from around the world. Fred Miller, M.D., Ph.D., head of the NIEHS Environmental Autoimmunity Group (EAG), chaired the steering and scientific committees for the event, which took place May 5-8 at the Bolger Center in Potomac, Maryland.

Myositis is a rare, multisymptom disease that can affect people of all ages and involves dermatology, rheumatology, neurology, and pulmonary disease, among others (see sidebar).

"Our main goal was to share state-of-the-art research covering all forms of myositis and to include basic researchers and all specialties caring for myositis patients," said Miller. "It was a great success, and laid the groundwork for important future collaborations."

In addition to support from NIEHS, the conference received funding from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Institute of Neurological Disorders and Stroke (NINDS), as well as 20 patient support group and corporate sponsors.

Trainees take active roles

"The conference focused on trainees and young investigators," said Lisa Rider, M.D., deputy chief of the EAG and a leading researcher in juvenile myositis. Rider served as vice chair of the scientific committee and a member of the steering committee.

Six trainees received abstract awards and made oral presentations, and all received reduced registration fees, Rider explained. The event also offered a special mentoring session on how to become successful myositis researchers.

Hanna Kim, M.D., a NIAMS clinical fellow, received an outstanding abstract award for her research on juvenile dermatomyositis. "This gave me the chance to give a plenary presentation," said Kim. "I got a lot of thoughtful feedback from international experts."

Patients at center stage

A central focus of GCOM 2017 was the involvement of patients and their advocates. Two major support groups, The Myositis Association and the CureJM Foundation, participated in the steering and organizing committees. CureJM sponsored two special sessions on juvenile myositis, including one by lead researchers in the area and a second to consider priorities for future research directions with patient input. The Myositis Association led a session focused on patient-related issues.

"As a rare, neglected disease, myositis doesn’t get much official attention or funding," Miller said. "Patient support groups serve an important function in raising awareness and funding for research."

Adam Schiffenbauer, M.D., an EAG staff clinician, heard satisfaction expressed by many of the patients at the conference. "A lot of the program was directed at addressing what patients want and what we are doing to support them," he said.

NIEHS and NIH scientists involved

Other NIEHS scientists who presented their research included EAG biologist Terry O’Hanlon, Ph.D.; Rita Volochayev, Ph.D., a nurse practitioner; and research volunteers Lori Love, M.D., Ph.D.; Takayuki Kishi, M.D., Ph.D.; and Sara Faghihi Kashani, M.D.

Prominent National Institutes of Health (NIH) scientists included NIAMS Director Stephen Katz, M.D., Ph.D., and Andrew Mammen, M.D., Ph.D., a researcher in the NIAMS Muscle Disease Unit. Mammen served on the steering and scientific committees. Other NIH researchers also participated, as abstract presenters, speakers, and attendees.

Going forward

With 310 participants, the meeting was twice the size of the 2015 inaugural conference in Stockholm, Sweden. Building on the success of this year’s conference, the next of the biennial series, GCOM 2019, will take place in Berlin.

"We're doing a formal post-meeting survey and so far, we've gotten nothing but very high praise," Miller said. "Many have said this was best meeting they'd ever been to."

(John Yewell is a contract writer for the NIEHS Office of Communications and Public Liaison)

GCOM 2017 attracted 310 participants from 22 countries on five continents.

GCOM 2017 attracted 310 participants from 22 countries on five continents. (Photo courtesy of Lori Love)

Participate in an NIEHS clinical study

NIEHS clinical studies related to myositis are now recruiting participants.

Pathogenic Studies in Families with Twins or Siblings Discordant for Systemic Rheumatic Disorders — A study of twins and siblings seeks to understand causes for the development of systemic rheumatic disorders such as myositis, based upon age of onset.

Environmental Risk Factors for the Anti-Synthetase Syndrome — The MYORISK Study — A study enrolling patients who have been diagnosed with polymyositis or dermatomyositis in the past two years and have lung involvement. The purpose of this study is to attempt to determine what environmental exposures may lead to the development of myositis.

Environmental Risk Factors for the Development of Myositis in Military Personnel — An NIEHS study enrolling patients who developed dermatomyositis or polymyositis while on active duty in the military. The purpose of this study is to evaluate specific exposures in the active military duty population that might predispose them to develop myositis.

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