International Pachyonychia Congenita Research Registry (IPCRR)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT02321423|
Recruitment Status : Recruiting
First Posted : December 22, 2014
Last Update Posted : November 21, 2018
|Condition or disease|
HOW TO PARTICIPATE IN IPCRR
Step One: The IPCRR forms are available online at http://www.pachyonychia.org/patient-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 Type :||Observational [Patient Registry]|
|Estimated Enrollment :||2000 participants|
|Target Follow-Up Duration:||1 Year|
|Official Title:||International Pachyonychia Congenita Research Registry|
|Study Start Date :||April 2004|
|Estimated Primary Completion Date :||December 2030|
|Estimated Study Completion Date :||December 2030|
- Describing patterns and traits of Pachyonychia Congenita [ Time Frame: Once a year ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02321423
|Contact: Holly A Evansfirstname.lastname@example.org|
|Contact: Janice N Schwartzemail@example.com|
|United States, Utah|
|Pachyonychia Congenita Project||Recruiting|
|Salt Lake City, Utah, United States, 84117|
|Contact: Janice Schwartz 801-987-8758 firstname.lastname@example.org|
|Contact: Holly Evans 8019878758 email@example.com|
|Principal Investigator: C. David Hansen, MD|
|Principal Investigator:||C. David Hansen, MD||Pachyonychia Congenita Project|