Research Opportunity | Independence & Skeletal Dysplasia

Young adults (18-25 years) with a skeletal dysplasia diagnosis and short stature are invited to participate in this research study!

This new study aims to understand what independence means to you, and to understand your priorities in terms of independence. Another focus of this study is to find out what obstacles and challenges you have faced and what resources you have used related to your independence. The study is entirely in English.

TAKE PART!

What does participation in this study look like?

1. Questionnaire (15 min):
Interested young adults can begin by reviewing detailed study information and filling out a questionnaire: https://redcap.link/independence-study

2. Online Interview (60 min):
Selected young adults will be invited to set up a virtual interview. Interviews will be conducted in English and last around 60 minutes. Personal identifiers will be removed when the recorded interviews are transcribed.

Purpose

Project Name: Defining and Understanding Priorities for Independence Among Young Adults with Skeletal Dysplasia and Short Stature.

Responses from this study will add to knowledge about independence among young adults with skeletal dysplasia and short stature. The researchers hope this understanding will help healthcare providers assist young adults in achieving their independence related goals.

Who conducts this study?

This work is being carried out by the Department of Human Genetics of the Cincinnati Children's Hospital Medical Center, Cincinnati University, USA.

Principal Investigator:
This email address is being protected from spambots. You need JavaScript enabled to view it., MD, PhD

Study Coordinators:
This email address is being protected from spambots. You need JavaScript enabled to view it. and This email address is being protected from spambots. You need JavaScript enabled to view it.

Questions

Contact the research team: This email address is being protected from spambots. You need JavaScript enabled to view it. or (513) 803-1376 and mention the “independence study.”