Viewing Study NCT02321423



Ignite Creation Date: 2024-05-06 @ 3:36 AM
Last Modification Date: 2024-10-26 @ 11:35 AM
Study NCT ID: NCT02321423
Status: RECRUITING
Last Update Posted: 2018-11-21
First Post: 2014-12-12

Brief Title: International Pachyonychia Congenita Research Registry
Sponsor: Pachyonychia Congenita Project
Organization: Pachyonychia Congenita Project

Study Overview

Official Title: International Pachyonychia Congenita Research Registry
Status: RECRUITING
Status Verified Date: 2018-11
Last Known Status: None
Delayed Posting: No
If Stopped, Why?: Not Stopped
Has Expanded Access: False
If Expanded Access, NCT#: N/A
Has Expanded Access, NCT# Status: N/A
Acronym: IPCRR
Brief Summary: International Pachyonychia Congenita Research Registry IPCRR is a patient registry for those suffering from Pachyonychia Congenita PC PC is an ultra-rare extremely painful skin disorder that causes painful blisters and callus on feet and sometimes hands thickened nails cysts and other features The IPCRR consists of a questionnaire patient photos optional physician notes from telephone consultation to validate questionnaire and free genetic testing
Detailed Description: HOW TO PARTICIPATE IN IPCRR

Step One The IPCRR forms are available online at httpwwwpachyonychiaorgpatient-registry The Consent Form protects your privacy and the Questionnaire gathers important details that distinguish PC from other conditions and helps to identify specific characteristics of each type of PC You may stop and start as often as needed before completing the forms If you are not certain about an answer you may skip that question

Step Two Take photos as shown in the Questionnaire sample photo page You can upload the images online with the Questionnaire If you prefer you may email the photos Photos of your PC are very important Note If you do not have access to a computer and wish to have the IPCRR forms mailed please contact PC Project

Step Three When your Consent Form Questionnaire and Photos are received by PC Project we will have an intake call with you to review your information and to discuss the next steps

Step Four If referred for genetic testing you will then be sent the special saliva test kit no travel required Usually only saliva is needed and from only one family member The sample is collected by spitting into the vial in the kit and then mailing it in the envelope provided Genetic testing is complex and time-consuming - it is not like a sugar test or pregnancy test and can take many months to be completed but the testing begins as soon as your sample arrives

When the confirming results are received a full genetic testing report is provided to you with precise information and suggestions specific to your condition You may find the report very valuable with physicians or other medical providers as well as for school personnel employers disability hearings or other special needs All information is held confidentially by PC Project and the research is reported anonymously There is no cost to you for any of these tests or assistance from PC Project You may also request additional consultations as needed

Study Oversight

Has Oversight DMC: None
Is a FDA Regulated Drug?: False
Is a FDA Regulated Device?: False
Is an Unapproved Device?: None
Is a PPSD?: None
Is a US Export?: None
Is an FDA AA801 Violation?: None