Tuesday, September 29, 2015

CHADD and Attention Point Partner to Improve ADHD Treatment Monitoring

guest blog by Sam English, PhD, and Michael MacKay, JD, MS, CPA

On September 28, 2015, CHADD announced a new benefit for parent members to help improve ADHD treatment monitoring.

“After a child is diagnosed with ADHD, and treatment initiated, it is important for parents, teachers, and clinicians to have regular ongoing communication” said Michael MacKay, president of CHADD. “Fortunately, there are new online tools available that facilitate this and we have partnered with Attention Point to make their online communication tool, DefiniPoint, available to our parent members for free.”

DefiniPoint is a HIPAA secure suite of online tools that improves communication enabling clinicians to easily gather feedback from parents and teachers about the efficacy of ADHD treatment. With this information clinicians are able to make a more informed decision on the child’s ADHD care.

“Regardless of the type of treatment involved, whether medication, behavioral therapy, or dietary treatment, it is essential the clinician know how well core ADHD symptoms are being managed and how the child is performing in important domains so adjustments can be made to optimize the child’s ADHD care,” stated David Rabiner, PhD, clinical psychologist, research professor, and associate dean at Duke University. “But unfortunately, recent research suggests that this may not always be the case. A study by Epstein et al. shows that rating scale data from parents and teachers, which help determine a child's treatment response, is rarely a part of follow-up medical visits. As a result, it is likely that many children are deriving less benefit from treatment than they would if treatment monitoring were occurring.” For this reason, ADHD treatment guidelines from the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry highlight the necessity of sustained, systematic treatment monitoring.

In July 2015, CHADD and Attention Point formed a strategic partnership to increase awareness of the importance of treatment monitoring and to increase access to educational and ADHD management resources. “We’re glad to be working with such a wonderful organization and I applaud CHADD for recognizing the need for better communication,” stated Sam English, PhD, founder and CEO of Attention Point. “I believe DefiniPoint will benefit CHADD parents and families and ultimately result in better care for children with ADHD.”

Learn more about CHADD member benefits and join today.  Once you've joined, you'll receive information on how to access your free use of DefiniPoint.

If you're already a CHADD member, use the Attention Point Schedule a Call feature to speak with one of their team members.

Sam English, PhD, is the founder and CEO of Attention Point, LLC. Michael MacKay, JD, MS, CPA, is the president of CHADD.

Tuesday, September 1, 2015

Why Participate in ADHD Research?

guest blog by Meghan Miller, PhD

Adults and families affected by ADHD often ask this question. They may wonder if it’s really worth the effort or if their input will actually make a difference. It certainly does!

Participation in research is important and crucial for three primary reasons:

  • Participating in research offers a powerful way to make a difference in the lives of individuals affected by ADHD. It is the only way we can find new treatments and improve existing ones so they work more effectively.
  • Participating in research helps us understand how ADHD develops so that we can work toward new approaches to prevent the impairments often associated with ADHD.
  • Participating in research provides you an opportunity to tell researchers what issues are important to the people most impacted by ADHD — children, adults, and family members directly affected by the condition.

An even more common question is, “What does research participation involve?” The short answer is that it varies depending on the type of research being conducted. For example, a study testing the effectiveness of a new medication will have different requirements than a study focused on understanding academic skill in children with ADHD. It is important to ask questions about the goals of the research and methods involved to determine if the research study is a good fit for you or your family member. For example, you might ask:

  • “Will my child be given an IQ test?”
  • “Will I be placed inside an MRI scanner?”
  • “Will my family member be asked to take medicine?”

Many research studies will conduct a thorough diagnostic evaluation for ADHD, often including IQ testing and sometimes including neuropsychological and academic testing. Oftentimes these studies will provide you with verbal or written feedback based on these tests — if you ask for it. Most studies also provide you with monetary compensation for your time or a small gift for your child’s efforts.

Hopefully the question you’re asking now is, “How do I get involved in research?” Here are a few resources to help get you started:

  • Head to CHADD.org, where a list of research studies from all over the country has been compiled.
  • If you’re located near a college or university, contact their psychology or psychiatry departments and ask if they have any ongoing research studies focused on ADHD. Sometimes this information will be featured on departmental websites. For example, at my institution, the UC Davis MIND Institute, we list studies in need of participants on our website. Examples of our current research studies focused on ADHD include a project focused on infants with a family history of ADHD in order to better identify ADHD early in life, a study of medication to treat ADHD in teens, and a longitudinal brain imaging study of self-control in adolescents and young adults with ADHD.
  • Ask your doctor. Sometimes physicians who treat patients with ADHD know about local research studies and can point you in the right direction.

Here at the MIND Institute, we are excited to be embarking on a new project that will link people with ADHD with clinicians, researchers, advocates, support groups, and each other through an innovative, privacy-assured online platform called Platform for Engaging Everyone Responsibly, or PEER, a project of Genetic Alliance. Led by Julie Schweitzer, PhD, this will involve partnering with local and national ADHD support groups, including CHADD and the Parent Education Network. The hope is that families affected by ADHD will be able to learn from one another by using a computer from their own homes. And, by sharing their health information, they will help researchers who are determined to develop better treatments for people with ADHD.

Ultimately, participating in research involves collaboration among individuals and families affected by ADHD, and researchers who hope to better understand ADHD.

A version of this article appears in the August 2015 issue of Attention magazine. Join CHADD and receive every issue!

Meghan Miller, PhD, is a postdoctoral fellow at the UC Davis MIND Institute and a member of the editorial advisory board of
Attention magazine. She is one of the recipients of the 2015 CHADD Young Scientist Research Award. Her submission was titled, “Infants at risk of ADHD: A longitudinal study.”