About the Study

The Polycystic Kidney Disease Treatment Network (PKD-TN) has developed the HALT PKD clinical trials to evaluate certain FDA approved drugs that may be effective in slowing kidney growth in persons who have polycystic kidney disease. Seven centers across the United States are participating in the two trials.

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Alan found out he had polycystic kidney disease around 5 years ago. He has generously agreed to share his story for us.

I had never heard of Polycystic Kidney Disease until about five years ago when an MRI revealed spots proliferating my kidneys and liver. I was 45 and the cause of my stomach trouble leading to these tests had nothing to do with the PKD they discovered. The big fear was cancer so when we reviewed an autopsy that had been performed on my father and found that he had PKD, it was actually a minor relief.

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Nutritional Corner by Kelly Welsh, R.D, C.D.

this months recipe is Roasted Corn and Edamame Salad, click here to read more.

The ADPKD Genetic Modifier Study

The National Institute of Diabetes & Digestive and Kidney Diseases (NIDDK) recently awarded HALT-PKD investigators additional funding to expand their research on autosomal dominant polycystic kidney disease (ADPKD). Upon receiving this funding, HALT-PKD researchers created the ADPKD GENETIC MODIFIER STUDY to identify genetic factors that influence the severity of kidney disease in ADPKD patients. Family members of HALT-PKD participants enrolled at the Colorado, Emory, Kansas and Mayo sites are respectfully encouraged to participate in this important research effort.

The ADPKD GENETIC MODIFIER STUDY will involve more than 4,000 patients worldwide. Those joining the study will be asked to provide a blood sample and information regarding their family history of ADPKD. Each participant will also be asked to supply clinical information from their medical records. The blood sample that is supplied by the participant will permit researchers to isolate DNA and obtain a measurement of kidney function.

As you may know, the severity of ADPKD, or when a patient develops renal insufficiency, varies amongst patients, even those from the same family. Continued advancements in the field of genetics, including the use of a genome-wide association study (GWAS), make it possible to discover whether particular genes are directly related to the severity of the disease in each ADPKD patient. Such advancements also permit scientists to explain some of the variation seen between patients.

The ADPKD GENETIC MODIFIER STUDY investigators believe that the study will identify novel proteins and cellular pathways involved in the development of ADPKD. Additionally, the investigators hypothesize that the study may improve the ability to predict when renal insufficiency will occur in individual patients. It is thought that in the future these findings will be of therapeutic value in guiding the treatment of ADPKD patients.

All HALT-PKD study participants at the sites involved in the ADPKD GENETIC MODIFIER STUDY with family members voicing an interest in joining the study are encouraged to contact their HALT-PKD study coordinator for information on how to become a study participant.

List of Study Coordinators:
Colorado: Bernice Gitomer 303-724-1685
Wei Wang 303-724-1681
Emory: Stacie Hitchcock 404-712-1235
Nazgah Ali 404-712-9209
Jane Wei 404-712-1181
Nirali Desai 404-616-4946
Kansas: Cathy Creed 913-588-0053
Sheri Copeland 913-588-7691
Denise Loftus 913-588-6069
Mayo: Christine Hanzel 507-284-0944
Vickie Kubly 507-266-9207