The following resource is intended as a quick guide for prospective parents who are interested in pursuing In Vitro Fertilization with Preimplantation Genetic Testing for Monogenic Disorders (PGT-M) to prevent PKD from being passed on to the next generation.

Those interested in learning more about or applying for our PKD-Free Babies Grant Program can do so at any time during their family planning journey.

PKD-Free Alliance extends gratitude to Sinem Karipcin, MD, Director of the Pre-Pregnancy Genetics Program at Columbia University’s Fertility Center, for her assistance in crafting this educational resource. This Center is currently ranked #1 on Newsweek’s “America’s Best Fertility Clinics 2026” listing.

1. Seek specialized PKD care.
   As of April 2026, there are over 35 adult PKD Centers of Excellence (COEs) located nationwide. These centers provide comprehensive, multidisciplinary care for families affected by polycystic kidney disease. Key areas of services at COEs include, but are not limited to, nephrology, radiology, genetics, cardiology, hepatology, nutrition, and obstetrics. Patients can also consider care at one of the 30+ PKD Partner Clinics for adults. This virtual map can help locate care in your area.

2. Meet with a genetic counselor.
   A genetic counselor can provide pre-test counseling and help you decide whether genetic testing is right for you in order to understand the specific genetic change responsible for PKD. Genetic testing for PKD usually involves a blood or saliva sample, or a cheek swab. Generally speaking, nephrologists authorize and order the test while genetic counselors specialize in interpreting results.

   Patients who previously underwent genetic testing who may not have received a detailed explanation of their results are also encouraged to consult with a genetic counselor.

3. Ask your genetic counselor or nephrologist for fertility clinic recommendations.
   These providers often know which clinics have experience caring for patients with genetic kidney conditions in your area.

4. When you meet with the Reproductive Endocrinology & Infertility (REI) specialist:

   • Ask about the clinic’s policies regarding embryo transfer, including their policies about transferring embryos with genetic findings.

   • Request a full pre-IVF work-up so the team can understand your medical needs.

   • Ask about the care team they will build for you as a patient. Depending on whether the male or female partner is affected and the genetic type and extent of the disease, the team may include:

     • A high-risk obstetrician (Maternal-Fetal Medicines specialist)

       1. PKD patients have an increased risk for pregnancy complications, such as preeclampsia, changes in kidney function, and worsening of proteinuria (protein in urine).

     • A nephrologist

       1. Will work closely with the Maternal-Fetal Medicine specialist to monitor renal function.

     • A neurovascular specialist or surgeon

       1. Individuals with autosomal dominant PKD have a higher risk of intracranial aneurysms. This specialist can provide risk-screening and overall safety clearance, especially in instances of personal or family history of brain aneurysm or hemorrhagic stroke.

Following the steps above can help ensure that care is coordinated, personalized, and safe.

Interested in connecting with other families who utilized IVF with PGT-M to have a PKD-Free Baby? Contact us.