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 A Day in the Life of a National Children’s Study Community Liaison (September 2009)

September 2009

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National Children’s Study in the News: Recent Media Coverage

The National Children’s Study continues to garner media attention.

Menomonee Falls NOW
- June 26, 2009
“Local Organizations Stand Behind the National Children’s Study”

Orange County Register
- June 26, 2009
“Rancho Santa Margarita Picked for Children's Study”

Asha Leader
- June 16, 2009
“National Children’s Study Update”

Age of Autism
- June 12, 2009
“HuffPo: David Kirby’s Seven Studies to Watch”

Main Line Times
- June 12, 2009
“Survey of LM Children Set”

Philadelphia Inquirer
- June 10, 2009
“Major New Study to Seek Answers on Autism”

University of Hawaii News
- June 8, 2009
“New Chair to Lead Women's Health Efforts at UH Manoa Medical School”

Duplin Times
- June 4, 2009
“National Children’s Study, A Sense of Community”

Edgerton Enterprise
- June 3, 2009
“National Children’s Study Begins Locally”

Queens Public Television
- June 3, 2009
“Queens Perspectives- Fighting the Stigma of Mental Illness (with National Children’s Study)”

Clinical Psychiatry News
- June 1, 2009
“Recruitment Gets Started for National Children’s Study”

Laguna Beach Independent
- May 29, 2009
“Local Kids’ Health to Influence National Study”

KTVX ABC-4 (Salt Lake City, UT)
- May 19, 2009
“National Children’s Study”

Jasper Journal
- May 11, 2009
“Pipestone County Part of National Children’s Study”

University of Wisconsin News
- May 8, 2009
“National Children’s Study Set to Roll Out in Waukesha”

Wisconsin State Journal
- May 8, 2009
“Waukesha Part of Large Study on Health of Children”

WUWM (Milwaukee, WI)
- May 8, 2009
“Recruiting for Children’s Study Begins Monday in Waukesha County”

Capital Times
- May 7, 2009
“University of Wisconsin-Madison Part of Largest Children's Study Ever”

Duplin Times
- May 7, 2009
“Do It for the Kids”

Pipestone County Star
- May 7, 2009
“Landmark Study Targets Pipestone Children”

Rochester Business Journal
- May 7, 2009
“URMC to Participate in Landmark Children’s Study”

Nursing for Women’s Health
- May 1, 2009
“Children’s Health and the Environment”

Orange County Register
- May 1, 2009
“Recruiting Women for Study Includes a Few Door Slams”

IN THIS ISSUE:

Feature
- A Day in the Life of a National Children’s Study Community Liaison
Good to Know
- Low Levels of Vitamin B12 May Increase Risk for Birth Defects
 
- Report from the Community Engagement and Outreach Subcommittee
 
National Children’s Study to Select a Repository for Biospecimens and Environmental Samples
- Study to Select Repository for Participants’ Samples
 

Feature

A Day in the Life of a National Children’s Study Community Liaison

“There is no typical day,” quips Katie Miller, community liaison for the National Children’s Study’s Waukesha County Vanguard Center, near Milwaukee, WI.

A glance at her to-do list confirms her sincerity. In one day, Katie may deliver a presentation for Waukesha business leaders, approve an article for a local newsletter, call into a national Study meeting, and finalize an evaluation survey—all before lunch.

“That’s what I love about my job. No two days look alike,” says Miller.

Katie divides her time between her office and church socials, business luncheons, and PTA meetings in the communities she serves. Each gathering is an opportunity to introduce people to the Study, answer their questions, and stoke their enthusiasm. For the community members of Waukesha County, Katie has become the face of the National Children’s Study.

National Children's Study- Waukesha County balloons

The Waukesha County
Vanguard Center promotes the
National Children’s Study
at a local community fair.

The Role of the Community Liaison

Katie’s role, while special, is not unique. Study requirements mandate the inclusion of community liaison staff at each Study Center. These liaisons work to increase awareness, interest, and enthusiasm for the Study by building partnerships, working with their Community Advisory Boards, and finding unique ways to engage residents.

As Katie explains, “We are cheerleaders for the National Children’s Study. Our jobs are to build trust.”

Trust is critical. While the promise of the Study is great, its complexity, scientific rigor, and 21-year span make it a serious commitment. Understanding the Study’s purpose and methods will ease both the minds of community members and the work of recruiters. Eligible women will be more likely to participate if the Study is familiar, and supported by friends, family, and local leaders.

Enter the community liaisons.

Their work begins years before recruiters begin knocking on doors. Using a mix of mass media and individual meetings, liaisons introduce the Study to the entire community, not just the specific neighborhoods where recruitment will occur.

Community is more than just geography, explains Brittany McCray, the community liaison for the Queens Vanguard Center in Queens, NY.

“It’s a religious community, an ethnic community. Community can even be groups of bloggers, or knitters, or people interested in health."

The idea is to cast a wide net, creating general excitement and discussion about the Study. Ideally, when a recruiter first visits a home, the resident’s response will be, “Oh, I’ve heard of that.”

Getting the Word Out

To achieve this goal, liaisons employ a range of outreach strategies as diverse as the communities they serve. Pam Silberman, the community liaison for the University of Utah Study Center, Salt Lake City, UT, uses a mix of mass media and in-person meetings for her mid-sized urban Study location.

University of Utah Study Center Banner

The University of Utah Study Center uses the slogan “Live Your Life. Change the World,” to inspire their community to support the Study.

She’s appeared on the popular local television shows Good Things Utah and Studio 5; hung banners at community pools and soccer parks; distributed brochures at neighborhood festivals; and given presentations to influential religious and civic groups. Pam bolsters these grassroots activities with a professionally developed television and radio campaign that has proven particularly effective.

“People say all the time, ‘Oh, I saw your ads!’” Pam explains. “They’ve definitely helped get the word out.”

Like Pam, Brittany uses a range of methods to promote the Study in her large, urban area. She finds individual and small-group interactions to be the most effective ways to address the many languages and cultural norms in Queens County, one of the most diverse counties in the country.

“Each neighborhood is so different,” she explains. “We need to do the macro-level outreach, but also a micro neighborhood-by-neighborhood approach.”

Earning the support of community leaders has been an important strategy for all of the Study Centers, but especially in Queens. The Center first approached the Queens Borough president, who is now an enthusiastic and highly visible Study supporter. Since then, their community liaisons have reached out to other notable influencers, including religious leaders and community organizers. For instance, Brittany and her team have engaged leading rabbis to help promote the Study to the region’s Bukharian Jewish population.

Facing Challenges

Tailoring the messages and approaches for each individual community is vital to overcoming one of the Study’s greatest hurdles—explaining its very essence, ranging from its complex design, to security issues, to enrollment methods.

Katie, Pam, and Brittany have each encountered questions from eager community members who would like to participate in the Study, but for some reason are not eligible. Explaining the narrow eligibility requirements can be challenging when ineligible individuals believe in the Study’s promise and want to contribute to its success.

By contrast, assurances are also needed for those who are suspicious of strangers knocking on the door. The sensitive nature of the Study’s plans for collecting genetic and other samples can be uncomfortable for some people, or contrary to their cultural norms. Study Centers must also address a wide range of languages and dialects. Over 140 languages are spoken in Queens alone. Assuaging skepticism and overcoming cultural and language barriers are top Study priorities. Many staffers on the outreach teams are multilingual, and are trained to answer community members’ questions. Study materials are also available in English and Spanish.

Vital to the Study. Vital to the Community.

The success of the Study rests in part on each liaison’s ability to successfully translate not just words, but science, so community members understand the methodology of the Study. Community liaisons help ensure that scientific methods and enrollment strategies are transparent. Katie explains that liaisons “act as a bridge from the very complex science of the [Study] to the community that will either accept it or not.”

Field Staff at Queens Vanguard Center

Field staff at the Queens Vanguard Center
model their Study t-shirts.

“We view information as power,” says Katie. While recruitment methods may seem confusing at first, people will accept them if they “understand that these are the best ways to ensure we get the best science in the end, and to make sure everyone who is eligible gets a chance to participate.”

Pam agrees that education of the community to the scientific process makes a bold statement. “It’s important to make research relevant to the people whose lives are affected.”

The community’s involvement, ultimately, will help determine the success of the Study. Discoveries about the roots of diseases and disorders such as asthma, autism, and diabetes are only possible if women and their families agree to participate in the Study.

Some Rewards Are Immediate

While these discoveries may be possible during the Study’s 21 year time frame, Katie, Pam, and Brittany feel like they are making a difference every day.

“It’s amazing to watch a stranger’s polite response to a request for a meeting, blossom into full-blown excitement about the Study, and the promise it holds,” explains Katie. “When someone asks me, ‘How can I help?’ I know I’ve done my job, and done it well.”

Brittany, too, is energized by “seeing the light bulbs go off as people begin to understand how the Study could affect our community.” She values her ability to engage “a community in a research process that normally they wouldn’t have access to.”

“Working to get the community engaged in research really resonated with me,” explains Pam, the former advocate and linguistics researcher. “If we only publish research in journals, it never filters down to the people whose lives are affected.”

The fact that the Study resonates with community liaisons—and the community members they are reaching—may be one of its greatest attributes. “As a mom,” Katie explains, “the most important job I have is to keep my daughters healthy, safe, and strong. "That's what the National Children's Study aims to do—only the Study does it for all kids."

“It’s incredible to be part of that. To be part of raising millions of healthy kids.”

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Good to Know

Low Levels of Vitamin B12 May Increase Risk for Birth Defects

You’ve heard of folic acid. Now enter Vitamin B12.

According to a recent study by researchers at the National Institutes of Health (NIH), Trinity College Dublin, and the Health Research Board of Ireland, children have a higher risk of neural tube defects if their mothers showed a low blood level of Vitamin B12 shortly before and after conception.

In the study, women with the lowest Vitamin B12 levels had five times the risk of having a child with a neural tube defect compared to women with the highest B12 levels.

Neural tube defects can cause devastating damage to an infant’s brain and spinal cord. One type, spina bifida, can cause partial paralysis. Another type, anencephaly, is fatal, causing the brain and skull to be severely underdeveloped.

Who’s Most at Risk?

Women who consume little or no meat or animal-based foods are more likely to have low B12 levels. Vegetarians who consume cheese, milk, or eggs on a regular basis generally would not be at increased risk. Certain digestive disorders can also prevent the body from absorbing sufficient amounts of B12.

Fortunately, B12 is easily obtained through a healthy diet and supplementation. Women who chose a vegetarian diet, or simply want to ensure their levels are high, can meet their B12 requirement through a dietary supplement.

For more information about Vitamin B12 and NIH’s research on the vitamin, please visit the NIH Web page

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Report from the Community Engagement and Outreach Subcommittee

The National Children’s Study Federal Advisory Committee met from May 26-27, 2009, in Rockville, Maryland. The agenda included a general Study update; reports from two Vanguard Centers; and scientific presentations on autism and childhood obesity. The meeting also allowed time for the Ethics, Scientific Review, and the Community Outreach and Engagement subcommittees to meet and report back to the larger group. The following is a summary of the report presented by the Community Engagement and Outreach Subcommittee.

Dr. Helen DuPlessis, Committee Chair, briefed the full Committee on suggested revisions to the current guidance document. This draft document outlines suggested best practices to Study Centers for mobilizing communities, building partnerships, and communicating about the Study. The following points highlight broad themes from the group’s discussion:

  • Effective engagement requires commitment to establishing a long-term, mutually beneficial relationship with a Study community. Defining what is beneficial, however, necessitates honest dialogue. Study Centers must work with their Community Advisory Boards to determine how area residents perceive the Study’s benefits.
  • Greater clarity is needed on what constitutes a community and what activities can be considered collaborations or partnerships. Stronger definitions will foster increased consistency among Study Centers.
  • The guidance should include key milestones and recommendations on staffing and training needs. It should also describe responsibilities and approaches for data dissemination, and offer recommendations on the use of new media technologies.
  • Committee members responded favorably to the idea of developing a toolkit and materials highlighting promising practices to supplement and support effective local programs.
  • Evaluation of the Study’s community outreach and education activities holds tremendous promise to advance knowledge in the field and should be pursued when feasible.
  • The partnerships and networks created through Study activities hold the potential to support other community mobilization initiatives in the local areas.

The Committee concluded by expressing support for the guidance document and reaffirming the critical importance of community outreach activities. Work will continue to finalize the community outreach and engagement guidance document.

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National Children’s Study to Select a Repository for Biospecimens and Environmental Samples

Consider the numbers.

The National Children’s Study in its first few years will enroll 100,000 households, conduct more than 800,000 home visits, and generate something on the order of 40 million unique biological and environmental samples. The Study will then follow participants to age 21, collecting additional data and samples in the process.

Collecting and storing these samples will be a logistical tour de force. In 2009, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), anticipates awarding a contract to an organization that will serve as the Study’s repository for biospecimens and environmental samples.

The National Children’s Study repository contractor will receive, process, store, and distribute biological and environmental samples. The biological and environmental sample archiving tasks required for the Study are highly technical and require extensive experience, expertise, specialized facilities, and long-term commitment.

Each Study participant’s samples are unique and cannot be replaced if lost, damaged, or contaminated. It is essential that samples be stored under optimal conditions. Different types of samples, for example, will require a wide range of storage temperatures. Protocols must guard against the potential of cross contamination or degradation. And procedures must be in place to prevent loss of or damage to samples due to a natural or man-made disaster. Such relentless attention to detail will ensure the integrity of Study findings and protect the vital contributions of research participants.

The award of the repository contract will be announced via the Federal Business Opportunities Web site

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Comments or Questions?

E-mail us if you have questions or comments
Visit our Web site at http://www.nationalchildrensstudy.gov

The National Children’s Study is led by a consortium of federal partners:

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
Centers for Disease Control and Prevention
U.S. ENVIRONMENTAL PROTECTION AGENCY
  9/1/2009
  9/1/2009