What is the International PC Research Registry (IPCRR)

 I thought it might be helpful to post "What is the IPCRr". This is also on the PC website (which is a public site open to all.)
The IPCRR is an IRB-approved registry (that means it is recognized by physicians and scientists world-wide and must follow the exact protocol that has been approved). PC Project funds all of the costs for the IPCRR. There are several thousand dollars involved in filing for approval and any form we use, or any translation into another language requires that.

There is never a charge to patients. Patients are asked to fill out the forms (30 minutes), take pictures, send all to PC Project. The benefit to the individual is
(a) a consultation with one of the few dermatologists specializing in keratin disorders in the world
(b) genetic testing to confirm PC (about 10% of those tested who are diagnosed with PC and 'look' like they have PC, have something else, some of which have treatments available),
(c) have support for special needs that come up (work, etc.)
(d) eligible to participate in clinical studies sponsored by PC Project
The benefit to the PC community (a) if no patients participated, we could not begin to have any progress at all so each patient that takes the 30 minutes helps every other patient and each patient that refused to do that hurts every other patient -- directly hurts our chances for success. That's why I feel that some services should be given only to those who at least spend the 30 minutes and not given to those who say "I'll wait here until you have something for me and then I'll want to participate." Does this make sense?

The steps of the IPCRR are
(1) Receive the Consent Form and Questionnaire. If printed and sent by mail, this step costs from $3 to $15 (depending on whether staff time is counted and where the packet is sent).
(2) Consultation with physician to validate the Questionnaire and answer questions. Physicians take from 15 to 60 minutes with each patient. This step costs $150 to $300.
(3) Referral for genetic testing. The blood kits or saliva kits cost from $50 to $75. Many are mailed out and never returned.
(4) Genetic testing. The initial tests cost from $2000 to $2500. When the mutation is not found quickly (within several weeks/months), the testing obviously involves much more time and the costs rise accordingly.
(5) A letter is sent with a mouth swab kit for GeneDx when the initial results are received as US law requires a second test before we can release the results to the patient. The second confirming test costs from $280 to $350. Many mouth swab kits are sent out, never returned to GeneDx and, therefore, the patient does not receive the results because we are not allowed to release them without the second test.
(6) The second test, which is confirming what has been found at University of Dundee, usually takes only a few weeks or a few months. Only one time has this needed to be re-done or delayed. Within a day or two of receiving the report, PC Project sends the full report with additional information to explain the information, copies of any pertinent articles, etc.

Let me know if this helps or is of interest.