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The Caregiving Study at the National Institutes of Health

Join the National Institutes of Health study investigating family caregiving for children with inherited metabolic conditions. Share your experiences and help develop interventions to support families. Participation involves surveys, interviews, and physical assessments. Your involvement contributes to ongoing research and understanding of caregiving dynamics. Open to parents over 18 years old proficient in English. Contact us to participate!

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The Caregiving Study at the National Institutes of Health

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  1. The Caregiving Study at the National Institutes of Health Exploring the relationship between stress, coping, and social support in families caring for children diagnosed with inherited metabolic conditions

  2. Study Goals • Understand how social environment might influence the way family members cope with caregiving responsibilities • Assess the impact of caregiving processes and the social environment on the genetic, cardiovascular, hormonal and immune markers of stress • Develop approaches to help families cope better and stay healthy

  3. Who can participate? Any parent or caregiver interested in sharing their story of caring for someone with an inherited metabolic condition • 18 years or older • Able to read, write, and speak English • Willing to share about your • Family relationships and support system • Concerns and beliefs about inherited metabolic conditions • Emotional/mental health and coping style • Caregiving and parenting experiences

  4. What’s involved? Phone interview 90 minutes At home Refer family/caregivers Phone consent 10 minutes Two online surveys 45 minutes In-person interview 90 minutes At NIH Blood draw Heart rate monitor Saliva samples

  5. How your participation helps • Share your story and experiences • Gain increased understanding about how your family works together to provide care to your child • Contribute to research focused on developing interventions to help families in the future who care for someone with a metabolic condition • Other family members or friends you are close with can participate in the online survey and phone interview

  6. Study Progress • Ongoing since spring 2016 • Over 70 families participated • 33 states • 4 countries (US, Canada, UK, Saudi Arabia) • Families of children diagnosed with: • Propionic Acidemia • Methylmalonic Acidemia • GM1 Gangliosidosis • Leigh Syndrome • Mitochondrial Disorder • Glutaric Acidemia Type 1 • Isovaleric Acidemia • Galactosemia • Carnitine Deficiency Syndrome

  7. Study Progress Continued Parents with children of any age are welcome to participate Parents with infants under the age of 2 needed!

  8. Participate at NIH Collaborations with: • Clinical and Basic Investigations of Methylmalonic Acidemia (MMA) • Natural History, Physiology, Microbiome and Biochemistry Studies of Propionic Acidemia (PA) • The NIH MINI Study: Metabolism, Infection and Immunity in Inborn Errors of Metabolism • Investigation of Neurodegeneration in the Glycosphingolipid Storage Disorders

  9. Contact us for more info CaregivingStudy@mail.nih.gov OR (301) 219-3394 Principal Investigator: Laura Koehly, PhD

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