Annie Oeth authored the following press release for UMC.
Researchers in SPARK can’t advance the understanding of autism if a broad cohort of families isn’t included.
The world’s largest study of autism spectrum disorder is working with the University of Mississippi Medical Center and other health organizations to include more families from underrepresented groups.
UMMC's pediatric arm, Children’s of Mississippi, is one of five locations in the United States dedicated to helping the study include more African American families. Increased inclusion of underrepresented groups is essential to SPARK’s goal of gaining a greater understanding of the genetic causes of autism.
SPARK also seeks to support the work of all researchers and develop culturally relevant engagement across a variety of communities.
“Any individual with autism (ASD) and their family can join SPARK through Children’s of Mississippi’s Center for Advancement of Youth,” said Dr. Gabrielle Banks, assistant professor of child development. “SPARK recruitment is active and passive. To increase the number of families in the study from underrepresented groups, our team has been making phone calls and hosting community outreach programs.”
SPARK includes more than 100,000 people with ASD and 175,000 family members. More than 30 of the nation’s leading medical centers have joined SPARK to help in reaching individuals and families affected by ASD.
Founded in 2011, the Center for Advancement of Youth, or CAY, offers multidisciplinary coordinated care for children with behavioral or developmental conditions throughout the state from its location in the Highland Bluff building in northeast Jackson.
Dr. Dustin Sarver, associate professor of pediatrics, forged the connections between SPARK and UMMC as a co-investigator, starting in 2016. “We had this opportunity because of the foundation that he worked to create,” Banks said.
Researcher Ayana Davis, a graduate student at Jackson State, has been leading the UMMC SPARK outreach to families since 2022.
“We’ve talked with more than 900 families by phone,” Davis said. “Connecting with patients and their families has meant listening to them and answering any questions they have. Sometimes families just need someone to talk to, and I want to be that person.”
Another SPARK goal is to create a transparent and trusted research environment and experience for all participants and their families, Davis said.
Banks praised Davis’ efforts to enlarge the SPARK cohort. “She has gone above and beyond in reaching out to families and creating a relationship with them based on a foundation of trust,” she said.
Independent adults with a diagnosis of autism spectrum disorder and legal guardians of those diagnosed with ASD can join SPARK online. Joining the study requires donation of DNA through a saliva sample or a cheek swab, which can be mailed in or dropped off at the Center for Advancement of Youth, or CAY. Davis has also picked up samples from families for SPARK.
UMMC is in its second 18-month grant round, each funded by a $120,000 supplemental grant.
Researchers in the genome-wide association study are looking for gene variations that may contribute to the neurological differences of ASD. Some people with ASD have a genetic condition that resulted in ASD. Other causes are not yet known. The abilities of those with ASD vary significantly. Some people with ASD need support in their daily lives while others need little to no help.
About one in 36 children has been identified with autism spectrum disorder, or ASD, according to estimates from the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network. ASD occurs in all racial, ethnic and socioeconomic groups.
Regardless of whether a family joins SPARK or is served by CAY, Davis provides them with resources in the community and state.
“While SPARK recruitment is important, it’s a secondary goal,” Banks said. “Connecting families to resources and giving them the support they need is primary.”
The other national SPARK sites dedicated to increasing numbers of underrepresented families include Texas Children’s Hospital in Houston, Cincinnati Children’s Hospital Medical Center, Kennedy Krieger Institute in Baltimore and Children’s Healthcare of Atlanta, a partner of Emory University School of Medicine.
As one of the national sites boosting SPARK’s outreach, CAY has registered an additional 106 SPARK participants from the African American community so far. CAY has hosted community support programs at St. John’s Missionary Baptist Church and New Horizon Church International in Jackson, and future programs are in the works.
In April, Banks presented her research, “Implementing Culturally Sensitive Recruitment Methods to Increase Diversity in Genetics Research,” at a SPARK symposium in Kansas City.
UMMC is partnering with the Color of Autism Foundation to present a family resource fair this fall.
Joining the SPARK study is simple and free, Davis said, “and the best benefit is knowing that you’ll be helping advance the understanding of autism and improve lives.”
To learn more about SPARK or to join, visit sparkforautism.org or email Davis at adavis25@umc.edu.
16 comments:
Kudos to the woke writer for using the now-popular reinvention of the word 'cohort'.
It used to mean one's associates in questionable activities, your friends who were associated with you in youthful dumb stuff, and even grown men who got together to sling beer bottles at road-signs.
Now I think, and Miss Oath might agree, it means any group with similar dynamics.
Other than that observation, I think the project is a grand idea and will bring millions of grant dollars to North State @ Woodrow.
The rate of autism in the 1970s was 1 in 10,000. Health authorities state it is 1 in 36 now. Why has this increased in such a dramatic rise and why aren't the health authorities and doctors not getting answers for it?
Actually, no. It was a name for a basic unit in the Roman army. Cohorts replaced maniples.
It truly is astounding the high occurrence of Autism....not much coming out of the medical world.
3:26, its too early to be drunk. In modern times, cohort is most often used in academic settings, usually a group of PhD students who start the program as a "cohort." Not sure why your mind gravitates to questionable activities. Or why you even feel compelled to comment.
5:30 I’m sure they’d be open to your suggestions.
Ok 5:57..... I'm open tell me what they have found so far. Not being smart, I really would like to know. The ball is fully in your court.
Why are there more??? Because the definition of the disorder has been so widely broadened as to include almost every person alive. And the "community" has gotten attention, when that might be good for those severely affected but it is outweighed by celebrities and perpetual victims clinging to a very loosely defined condition.
Read the words of the article: "Researchers in the genome-wide association study are looking for gene variations that may contribute to the neurological differences of ASD. Some people with ASD have a genetic condition that resulted in ASD. Other causes are not yet known. The abilities of those with ASD vary significantly. Some people with ASD need support in their daily lives while others need little to no help."
And the antivaxxers have long claimed "it's the jab!!!" and the paranoid cheer that on.
So, of course, everyone is now a victim, taking away from the real patients.
This only confirms how JJ posters lean toward conspirators. Y’all probably still think Beckwith was set up by the cabal.
"Anonymous said...
The rate of autism in the 1970s was 1 in 10,000. Health authorities state it is 1 in 36 now. Why has this increased in such a dramatic rise and why aren't the health authorities and doctors not getting answers for it?
May 8, 2024 at 4:15 PM"
Probably many reasons, but two are likely, 1. it's more diagnosed and treated now (it was just called being "slow" back then, and many times those folks were kept at home), 2. women being older now (many in their 40s) when having children.
For those of us who were not in the 'Roman Army', it meant what was posted at 3:26.
When asked by the principal or the constabulary, "Who are your cohorts in this endeavor?", not a damned one of us thought of the 'Roman Army'.
Increasing the breadth of the spectrum has increased the number diagnosed and also the relevant funding for same in the public education arena….need for more specialists and administrators. Just saying.
We’re all sick every day. Just ask any doctor.
Amazingly, that rise in kids on the spectrum is completely avoided in the Amish community. But, yeah it's just over diagnosed.
@9:17
You might be thinking “vaccines” but the reality is Amish fathers won’t let little Abraham Autismo sit in his room watching my little pony and playing Nintendo all day. He makes the boy work on the farm all day even if he is stuttering and twitching and can’t look the cows in the eye.
Meanwhile Karen in the burbs indulges Austin Autismo by filling his room with toys and tolerating his tantrums despite the fact that he is 26.
I have first hand and reliable second hand knowledge of many children who show no signs of it until they get the childhood vaccines at 2 years of age and with days up to two weeks they 100% have it. Thousands of children in Mississippi are declared by state health officials as vaccine injured and are exempt from further vaccines. There is also a vaccine compensation fund to care for the millions of American Children who are permenantly damaged from childhood vaccines. The information on how the damage occurs is easily found and far wider than I can even Imagine. So many people that are strange or quirky are functioning but damaged. Many others are SOL.
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