Refer a Patient

All services, including genetic testing, are provided at no cost to patients in the patient registry.

REFER A PATIENT

Connect to refer a patient or  by completing the IPCRR Forms. A physician, other medical professional, family member or friend may refer patients to the IPCRR for free genetic testing and all other support services provided to IPCRR participants. The IRB-approved protocol steps for the IPCRR are:

  1. The referred patient or physician can complete the online IPCRR Questionnaire and Consent Form by clicking here. Patient photos can be emailed to info@pachyonychia.org.
  2. Once all information is received, the case will be reviewed to determine if genetic testing is possible through the registry.
  3. If referred for genetic testing, PC Project will mail a saliva collection kit to the patient or medical professional. The sample will be returned to PC Project for testing.
  4. Once the genetic testing results are received, PC Project will provide a a full written report to the patient and to the referring physician authorized by the patient.
  5. The referring physician will be acknowledged/co-author in any publications involving the case.

Request a Case Study Review

Connect With Us to request a case study review. If you are uncertain whether or not to refer a patient or have questions regarding care for a patient, please do not hesitate to contact PC Project. We will ask for photos and other case information. We will arrange a telephone consultation and/or web meeting to review the case with our PC Genetics Team and other PC specialists available through our Medical and Scientific Advisory Board members and the members of the International PC Consortium (IPCC).


 

PC Patient Registry
Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC