ELK GROVE VILLAGE, Ill. - April 14, 2016 - PRLog -- Cure SMA has awarded a $50,000 clinical care research grant to Melissa Alderfer, PhD, at the Alfred I. DuPont Hospital for Children, for her project, "Screening for Psychosocial Risk among Families of Children With Spinal Muscular Atrophy."
Research has identified multiple ways in which SMA can affect both patients and their families. This includes psychosocial effects such as making difficult treatment choices, fatigue and stress, limitations on independence, uncertainty, and financial hardship.
Dr. Alderfer's project is focused on improving how these psychosocial difficulties are identified and treated, in order to ensure that the needs of those affected by SMA are properly met.
This grant to Dr. Alderfer is part of $100,000 in clinical care funding Cure SMA has announced over the last few weeks. Previously, Cure SMA announced a clinical care grant to Tariq Rahman, PhD, for $50,000.
Cure SMA funds clinical care research to understand the issues that affect daily life for people with SMA, from breathing to nutrition, and to improve their quality of life today.
Meet Melissa Alderfer
Who are you?
I am an Associate Professor of Pediatrics at Sidney Kimmel Medical College of Thomas Jefferson University, a Senior Research Scientist in the Nemours Center for Healthcare Delivery Science and a Licensed Clinical Psychologist with more than 15 years of experience in pediatric healthcare research.
How did you first become involved with SMA research?
This project is my first involvement in SMA research. My program of research focuses upon how childhood chronic illness impacts families, how families adapt and learn to manage illness and the healthcare system, and how we can intervene to improve the experience.
What is your current role in SMA research?
I am the Principal Investigator for this pilot Clinical Care Research Grant and will be leading our multidisciplinary investigator team on this work. Our team also includes Dr. Mena Scavina, a specialist in SMA care, who will bring her clinical perspective and expertise to the project, and Dr. Matthew E.R. Butchbach, a basic scientist and expert in the genetics of SMA, the molecular mechanisms underlying early onset motor neuron diseases like SMA, and using this information to develop and test novel therapeutic agents. His expertise in basic science and translating bench knowledge into clinical trials and effective treatments for children and families with SMA provides an additional highly valued perspective to our investigative team.
What do you hope to learn from this research project?
The purpose of this study is to create a tool to screen families of children with spinal muscular atrophy (SMA) for psychosocial risk factors such as financial difficulties, limited social support, patient and sibling behavioral problems, and family problems. Identification of families at greater psychosocial risk through systematic screening will help to ensure that psychosocial care is provided appropriately, psychosocial needs are met and families remain well functioning.
How will this project work?
The Psychosocial Assessment Tool (PAT), originally created to assess psychosocial risk among families of children with cancer, will be adapted for use with families of children with SMA. A standardized series of steps will be taken to adapt the measure including thorough literature review to generate additional items as needed, consultation with SMA healthcare providers and researchers to refine content of the measure, and pilot testing with families of children with SMA prior to finalization.
What is the significance of your study?
This project is the first in a series of studies that will produce a reliable and valid screening tool, feasible for use in SMA clinics that will ensure psychosocial needs of families of children with SMA are appropriately and efficiently identified and addressed.
###
About Cure SMA
Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA) - a disease that takes away a person's ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Since 1984, we've directed and invested in comprehensive research that has shaped the scientific community's understanding of SMA. We are currently on the verge of breakthroughs in treatment that will strengthen our children's bodies, extend life, and lead to a cure.
We have deep expertise in every aspect of SMA - from the day-to-day realities to the nuances of care options - and until we have a cure, we'll do everything we can to support children and families affected by the disease.
Learn more about how you can help us reach a treatment and cure at www.cureSMA.org.
Contact
Megan Lenz
***@curesma.org
Read Full Story - Cure SMA Awards $50,000 Grant to Melissa Alderfer, PhD, Alfred I. DuPont Hospital for Children | More news from this source
Press release distribution by PRLog
Cure SMA Awards $50,000 Grant to Melissa Alderfer, PhD, Alfred I. DuPont Hospital for Children
April 14, 2016 at 14:22 PM EDT
