Inchstone Project survey

Currently enrolling participants
Deadline to participate: August 10, 2023

Principal investigator: Inchstone Project

About the study

The ARRE Foundation is pleased to be collaborating on a new study to identify the priorities of families who have a severely affected loved one and to find ways to determine if positive, meaningful changes occur in response to new therapies.

Because we are specifically focused on meeting the needs of children and young people with severe to profound impairment, we are focusing on those who:

(a) Are at least 1-year old AND

(b) Have very severe communication challenges (largely or completely nonverbal and cannot communicate effectively even using nonverbal means).

And have either or both of the following:

(c) Severe challenges in mobility (require a stroller or being carried, even in the home) 

(d) Dependence on a feeding tube for nutrition or dependence on someone else to feed them.

This project is dedicated to filling the enormous gap in the ability of existing assessment measures to capture and reliably measure the small but meaningful “inchstones” our severely children affected achieve. Most of these assessment measures just say our children can’t do anything. We know that is not true and we need measures that can capture what they can do and what they continue to learn to do. 

Please note this survey was primarily developed by patient advocacy groups who serve individuals with developmental and epileptic encephalopathies (DEEs). However, a DEE diagnosis is not required to participate.

What does participation involve?

Participation includes a brief online eligibility screening questionnaire. If you are selected to continue onto the full survey, videos and written instructions will lead you through each step.

There are two parts to the full survey which will each take about 30 minutes (you can save your progress and come back later to finish). Participants will be offered a gift card upon completion of each part. The deadline to complete this survey has been extended to August 10, 2023.

How to enroll

If you are interested in participating, please contact info@arrefoundation.org for the link and access code to take the screening survey.

Additional information

The Inchstone Project has provided an FAQ page to answer common questions about participation.

Principal investigator

Inchstone Project, which is a collaborative effort of patient advocacy groups representing severely affected individuals and clinicians who are experts in outcome measurement

Use of Clinical Research ID (CRID)

This study uses a CRID, or Clinical Research ID. This is a unique identification number generated and known only to the participant. This ID number allows researchers to merge data across research projects without any personally identifying information from the participant. Please obtain a CRID prior to enrolling in this study, which is a simple online process that takes 2-3 minutes. Thank you for helping us improve data sharing in ASXL research!