MPS IVA Study: Psychological Concomitants of Morquio A syndrome

The Emory University School of Medicine is conducting a study in MPS IVA patients to compare the occurrence of psychological issues and quality of life before and after treatment to determine whether or not treatment of the physical symptoms reduces psychological issues and improves quality of life. See below for information. Visit clinicaltrials.gov for study details.

Psychological Concomitants of Morquio A syndrome – Longitudinal Effects of ERT (The MAPLE Study)

Investigator: Nadia Ali, Ph.D., Health Psychologist, Emory University School of Medicine, 404-778-8613, Nadia.Ali@emory.edu

Why?

Research with Morquio disease has primarily focused on exploring the causes and finding a treatment for the physical aspects of the disease. Little attention has been paid to the psychological or emotional toll. Yet the interaction between our physical health and our psychological health is a two-way street; that is, just as our physical health affects us emotionally (e.g. chronic pain can contribute to depression), so can our psychological health affect us physically (e.g. anxiety can contribute to feelings of chest pain or “butterflies in the stomach”). It is thus critically important to pay attention to any emotional and psychological symptoms associated with Morquio disease. This study is a comparison of the occurrence of psychological issues and quality of life before and after treatment (ie. ERT), to determine whether or not treatment of the physical symptoms reduces psychological issues and improves quality of life.

Who?

All adults (18 years old and up) with Morquio disease who have started ERT within the last 6 months or plan to start ERT for Morquio A syndrome soon. Participation is strictly voluntary!

What will I be asked to do?

You will be asked to complete three questionnaires every 6 months for a period of 2 years. The questionnaires usually take about 20 minutes to complete. All individual results are held strictly confidential, except as in accordance with Georgia law regarding suicidal and/or homicidal thoughts, child or elder abuse. Only anonymous group data will be reported.

If you would like to participate, please contact Dr. Ali (Nadia.Ali@emory.edu, 404-778-8613) or Stephanie Cagle (Stephanie.cagle@emoryhealthcare.org, 404-778-8421).

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