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The International Pachyonychia Congenita Research Registry (IPCRR) received IRB approval and began accepting participants on 1 May 2004.

From May 2004 through October 2006, the Registry Questionnaire was 44 pages. We need to gather a lot of information as really little validated information was available on PC. Based on the information gained from the first 150 participants, the Questionnaire has been revised to 20 pages and it has been re-approved in Oct 2006! We've learned to much from the PC participants that is directly impacting the research efforts.

You can click the Statistics link to see the current number of PC patients who have registered and the state and country where these patients reside.

How to participate

STEP ONE
If you wish to participate in the IPCRR, please contact PC Project in any of the following ways -

• Email. Please provide a telephone number, address and time when we may call you. Please include your country code if out of the USA.
• Mail. IPCRR, 2386 East Heritage Way, Suite B, Salt Lake City, UT 84109. Please provide a telephone number and time when we may call you.
• Call us toll-free at 877-628-7300

STEP TWO
Mary Schwartz has been approved as the Principal Investigator of the IPCRR. She will contact you to confirm (a) you believe you or a child under 18 has PC and (b) how you would like to receive the information. The screening will take only a few minutes.

STEP THREE
We will mail you the Consent Form or you may print the Consent Form from this website. [Click the link and print the pdf file]. Read and sign the form on page 8 (and page 9 for minors) and return all pages of the Consent Form to
IPCRR, 2386 East Heritage Way, Suite B, Salt Lake City, UT 84109. It is fine to mail the Consent Form with the Questionnaire and photos.

STEP FOUR
We will mail you the Questionnaire or you may print the Questionnaire from this website. [Click the link and print the pdf file]. Please send the Questionnaire with your photos to
IPCRR, 2386 East Heritage Way, Suite B, Salt Lake City, UT 84109.
NOTE - It is fine to mail it with the Consent Form.

Photos need to show fingernails, toenails, palms, soles, tongue, cysts, and other signs of PC you may have or which you wish to discuss with the doctor.

STEP FIVE
Once your Consent Form, Questionnaire and Photos are received by PC Project, a telephone consultation will be arranged with Dr. Sancy Leachman at a time convenient for you both. Dr. Leachman will review the photos and the Questionnaire responses. Dr. Leachman's file will be a medical record file and information will be released only for the IPCRR. Your personal information will be protected. There is no cost to you for this consultation.

STEP SIX
If you have requested genetic testing, Dr. Leachman will discuss that with you. Based on the consultation, Dr. Leachman may make the referral for testing. You will be sent the 'blood mailer' kit and we will coordinate with you to find a qualified laboratory where a small amount of blood can be drawn. The blood will be sent direct to the laboratory of Dr. Irwin McLean in Dundee, Scotland for the initial genetic screening.

When results are returned, we will send you a second 'mouth swab' kit which you can use at home. The swab will be sent direct to the laboratory of Dr. Sherri Bale in Gaithersburg, MD. When the results are confirmed, Dr. Leachman or a qualified genetic counselor will arrange to provide the results direct to you. There is no cost to you for these tests or for the consultation.

STEP SEVEN
The questionnaire, clinicial confirmation, and results of genetic testing (if you are referred for this), will be entered into the PCRR database. All personal information will be kept completely confidential within the PCRR. Qualified researchers who are also IRB approved will be able to access the non-personal information (all the important information you have provided in the Registry about PC). If a researcher wishes to contact you for any reason, they will ask the PCRR and we will let you know. You may then contact the researcher if you wish to do so.

Why do we want to have the
International pc research registry (IPCRR)
and how the IPCRR may help you

The first step in the scientific process is to gather information about a disease. Because PC is a very rare disease, sufficient information has not been available to allow meaningful research progress.

The International Pachyonychia Congenita Research Registry (IPCRR) is the only Research Registry specifically designed to gather data from those with PC. By gathering information from PC patients in one international registry (IPCRR), physicians and research scientists from around the world are able to effectively study the disorder.

We feel participation in the IPCRR is the most important thing a patient can do. Because PC is so rare, participation by each PC patient means a great deal.

When treatments are available, those participating in the IPCRR will have first access to those treatments but will not be obligated to utilize any treatment or participate in any clinical trial unless they wish to do so.

The IPCRR is conducted under Westerm IRB (Western Institutional Review Board) guidance. An IRB consists of a committee of physicians, statisticians, community advocates and others that review registry procedures. IRBs ensure that the registry is ethical and that the rights of participants are adequately protected.

The Western IRB regularly reviews the IPCRR to ensure compliance with guidelines concerning the privacy, safety, and security of the information collected from patients.

No personal information is ever released outside the IPCRR unless you give a written request for release of information. The nonpersonal, statistical data is made available only to qualified researchers who also have IRB approval.

To have a qualified Registry, and to interest researchers in our data and in PC, we must follow these steps as established and approved by our IRB so that scientists will be able to use our Registry information. This is the pathway to achieve research results.