PKDsource

Multimedia Sources

2008-06-06T16:36:00.001-07:00

PKD PSA

This 30-second public service announcement is a good multimedia source because it spreads the word about PKD. During the PSA different statistics are referenced as graphics play in the background. This would be a good source for anyone looking for a quick visual and audio clip that informed people about PKD. It would also be helpful for those looking to easily spread the work about PKD.

Multimedia: “PKD PSA.” YouTube. 27 Sept. 2006. 5 Apr. 2008. http://www.youtube.com/watch?v=Qm_DEHRjKe0.

Facts about dialysis treatment

This video from a CNN broadcast takes you into a dialysis center. The short clip is all about the increase in people who are needing dialysis and visiting dialysis centers. It gives a great overview of dialysis. The video is only a little over a minute and would be a great source for anyone who wants a brief explanation of dialysis and why patients must go on dialysis. The video shows a dialysis center, patients on hemodialysis and has an interview with nephrologist Dr. Edward Himot.

Multimedia: “Facts about dialysis treatment.” CNN. 28 Apr. 2008. 4 June 2008. http://www.cnn.com/video/#/video/health/2008/04/28/fortin.kidney.dialysis.cnn?iref=videosearch.

Polycystic Kidneys

This image shows two, side by side kidneys affected by Polycystic Kidney Disease. The image is very useful because the physical affects of PKD are not normally seen. However, this image clearly shows the disgusting and debilitating effects of PKD on the body. This image would be useful for anyone trying to show the physical effects of PKD. It would also be a good graphic to go along with any piece of writing on PKD.

Multimedia: “Polycystic Kidneys.” The Universtiy of New South Wales. Apr. 8 2008. 6 June 2008. http://web.med.unsw.edu.au/pathmus/F1340092.htm.

International Sites

2008-06-06T14:26:00.000-07:00

Kidney Research UK

This site is the leading UK charity that funds research to prevent, treat and manage kidney disease. Some of their research deals with PKD directly while other research deals with kidney disease on a broad scale. Their site is useful because it shows what is going on internationally to fight PKD. It also publishes some of its recent research dealing with PKD and kidney disease. While this source is useful for people looking to get a look into research in the UK, it covers a broad range of kidney diseases and should not be looked at as a source of general information about PKD.

Kidney Research UK Home Page. 2006. International Society of Nephrology. 1 June 2008. http://www.kidneyresearchuk.org.

World Hypertension League

Hypertension, or high blood pressure, is often the first or only symptom of PKD. Because the management of blood pressure is such an important aspect for those with PKD, this website serves as a great resource for anyone who is looking for more information on hypertension. The objective of this website is promote detection, control and prevention of hypertension. It’s resources include many articles about hypertension, a calendar of upcoming events, links to local or national partners and a subscription to a newsletter on hypertension. While this website does not have any affiliation with PKD, it still serves a good resource because hypertension is a big factor in PKD.

World Hypertension League Home Page. 2007. World Hypertension League. 1 June 2008. http://www.worldhypertensionleague.org.

Experts

2008-06-06T14:12:00.000-07:00

Nijsje Dorman

Dorman is the managing editor of the American Journal of Kidney Diseases, which is associated with the National Kidney Foundation. The journal contains a plethora of information about various kidney diseases, including PKD. As the managing editor, Dorman would be an expert in the field of kidney diseases and would be a good person to contact for someone looking for more information about PKD and kidney disease, especially in regards to their connection with the American Journal of Kidney Diseases.

Nijsje Dorman, PhD. Managing Editor, American Journal of Kidney Diseases. 1-617-636-9864. ndorman@tuftsmedicalcenter.org.

Dan Larson

As president of the only non-profit organization dedicated solely to PKD, Larson oversees the direction of the PKD Foundation’s efforts to inform people about PKD and the progress being made to find a cure. He is a good resource to contact for just about anything concerning PKD, especially those things concerning the PKD Foundation and its projects because he is the president of the PKD Foundation.

Dan Larson, President and Chief Executive Officer, Polycistic Kidney Disease Foundation, (816) 268-8455

Stefan Somlo

Somlo is a member of the Interdisciplinary Center for PKD Research (ICPKD), a partnership of scientific investigators who aim to foster and extend the development of new approaches to PKD. He is currently working on finding the genetic causes of both autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD). In addition to his research, Somlo has contributed to several publications dealing with Polycystic Kidney Disease. He would be a good source for someone who had specific questions about PKD research or about ICPKD.

Stefan Somlo, Associate Professor of Internal Medicine and Genetics, Yale; Interdisciplinary Center for PKD Research – Yale. Stefan.somlo@yale.edu.

Dave Switzer

As the director of marketing and public relations for a national organization on PKD, Switzer is very knowledgeable about the topic. Switzer works for the PKD Foundation, which works extensively with the disease. His job title requires him to know the basic information about PKD and the latest developments, research and the foundation’s efforts to connect people who have PKD. He is very personable and a good resource for someone wanting a person to contact for general information and help understanding PKD because he deals with the public relations of the foundation.

Dave Switzer, National Director of Marketing and Public Relations, Polycystic Kidney Disease Foundation, (816) 268-8463, DaveS@pkdcure.org

Joseph Vassalotti

Dr. Vassalotti is the National Kidney Foundation’s Chief Medical Officer. He serves on the clinical faculty of Medicine in the Division of Nephrology at Mount Sinai Medical Center in New York City and also oversees the NKF’s Early Evaluation Program, which aims to identify chronic kidney disease early. His experience in these positions makes him a very credible and reliable source for information on PKD or kidney disease in general. He would be a useful source for those looking at the studies of the National Kidney Foundation and their involvement with PKD.

Joseph A. Vassalotti, MD. Chief Medical Officer, National Kidney Foundation. 1 Gustave L Levy Place, New York, NY 10029.

For-Profit Associations

2008-06-05T00:32:00.000-07:00

DaVita

DaVita provided dialysis services for people with chronic kidney failure. It is the largest independent provider of dialysis services in the U.S. Because many PKD sufferers must go on dialysis once they reach the level of kidney failure, the DaVita company may have an impact on their lives. The company’s website is a good online resource for information on dialysis and a good place to sign up for newsletters. Visitors to the website can get access to information but must create an account before signing up for newsletters, etc. The company is good source for people interested in more information on dialysis and those interested in the privatization of dialysis providers.

DaVita. 2008. 5 June 2008. http://www.davita.com.

Targeted Genetics Corporation

The Targeted Genetics Corporation develops and commercializes molecular therapeutics. They target a variety of serious diseases with unmet medical needs. This corporation does not deal specifically with PKD but it’s developments with molecular therapeutics and gene delivery could be very useful for people interested in the genetics of PKD. It’s developments could help further the developments made in finding better cures and treatments for various diseases, including PKD.

Targeted Genetics Corporations. 2006. 5 June 2008. http://www.targen.com.

Government Documents

2008-06-04T23:56:00.000-07:00

S. 1053, Genetic Information Nondiscrimination Act

The Genetic Information Nondiscrimination Act (GINA) passed the senate on April 24^th, 2008 by a vote of 95 to 0. It was passed on to the White House to be signed. This act will protect individuals against discrimination based on genetic information when comes to both health insurance and employment. This is intended to encourage Americans to get testing for genetic diseases, such as PKD. It is a big breakthrough for those who have a chance of having PKD because they can now get tested without fear. This resource is a government document that lists the three versions of the bill and its many different sections. It is helpful for those wanting more information on the bill or wanting read the full bill that was passed by the senate.

United States. Cong. Senate. 108^th Congress, 1^st session. S. 1053, Genetic Information Nondiscrimination Act of 2003 [introduced to the U.S. Senate; 13 May 2003]. 108^th Congress. Congressional Bills, GPO Access. 7 May 2008 http://thomas.loc.gov/cgi-bin/query/z?c108:S.1053:.

Genetic Information Nondiscrimination Act: 2007-2008

This website is provided by the National Human Genome Research Institute. It provides more information on GINA, including the signing by the president and the bill’s history through the legislative process, with links to various forms of the bill. This site is a very important source because it not only links to official government documents but it also gives more background and up-to-date information on GINA.

Genetic Information Nondiscrimination Act: 2007-2008. 21 May 2008. National Human Genome Research Institute. 4 June 2008. http://www.genome.gov/24519851.

Recent Books

2008-06-04T23:10:00.000-07:00

Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis

This 240-page book is helpful for those who are looking for more information on understanding kidney failure, which is the ultimate outcome for PKD sufferers. It covers topics such as early warning signs, how to get a correct diagnosis and how to evaluate treatment options. In addition the author recommends a low protein diet as a big part of the 12-step program to avoid dialysis. While there is no conclusive evidence on the effectiveness of the diet, the book is still a good source of information about kidney failure.

Walser, Mackenzie, M.D. with Betsy Thorpe. Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis. Indianapolis: John Wiley & Sons, Inc., 2004.

To Live or Die in Arizona

This book is the first in a three-part series that follows the character of Abby Taylor as she uncovers mysteries while dealing with PKD at the same time. The daughter of a PKD Foundation co-founder writes the series and donates a portion of the proceeds from the book to the PKD Foundation. The books can be bought through the PKD Foundation’s website at www.pkdcure.org and would be good for anyone looking for a mystery novel with the added subject of PKD. It shows how the main character deals with PKD while living her normal life at the same time and may serve as a good inspiration to patients.

Lewis, Elizabeth Browning. To Live or Die in Arizona. Berkeley:Dromedary Press, 2002.

The Official Patient's Sourcebook on Polycystic Kidney Disease

This book was compiled as a manual for those interested in self-directed research on Polycystic Kidney Disease. Within its 224 pages, this book includes general information about the disease and its various forms, treatment options, recommendations on how to find guidance and additional references and internet sites that might be useful. Since the book contains information about various subjects in the PKD field, it would be a good print resource for doctors and caregivers as well as a resource for patients who want help looking for information or who want to make education and research a part of their treatment process.

The Official Patient’s Sourcebook on Polycystic Kidney Disease. Ed. James N. Parker, M.D. and Phillip M. Parker, Ph.D. San Diego: Icon Health Publications, 2002.

Statistical Sources

2008-06-04T22:52:00.000-07:00

Statistics about Polycystic kidney disease

This page is part of the Wrong Diagnosis website and lists links to several different statistics about PKD. The site contains statistics about complications, incidences, hospitalization and more. It even contains an estimation of the statistics by country for PKD. This source would be a good reference for anyone looking for facts about PKD or anyone who is interested in a particular area of the statistics.

“Statistics about Polycystic kidney disease.” 9 April 2008. Wrong Diagnosis. 4 June 2008. http://www.wrongdiagnosis.com/p/polycystic_kidney_disease/stats.htm.

Kidney and Urologic Disease Statistics for the United States

This website is part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). This page in particular lists statistics of kidney problems in the United states and includes information such as the prevalence, the cases per states, mortality and which diseases cause the kidney problems, which includes PKD. This site would be good for anyone looking for statistics to support their research or to better understand the widespread effect of kidney disease. The statistics are a few years old because of census data, but the information wouldn’t have changed too much and should still be relevant and useful.

“Kidney and Urologic Diseases Statistics for the United States.” 2008. National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC). 4 June 2008. http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/.

Online Reference Sites

2008-06-04T22:40:00.000-07:00

Mutation Database

This site is home to an online database that catalogues the changes detected in PKD and mutations to genes. The database is open to researchers and clinical work but the site also has links for patients. The information in the databases is a little difficult at first and takes time, however there is a page that has good information for patients. This site would probably be best for researchers or those invested in learning more about the molecular aspects of PKD. It’s main focus is in dealing with ARPKD but there is information about all forms on the website.

“Mutation Database.” 2 Sept. 2007. Department of Human Genetics at Aachen Universtiy. 4 June 2008. http://www.humgen.rwth-aachen.de/index.asp?subform=home.html&nav=standard_nav.html.

NIDDK Reference Collection

This online reference site is through the NIDDK reference collection. When searching “Polycystic Kidney Disease” the database pulls up over 70 results of articles, information and other useful references. Navigating the Internet can often be difficult, but this site gives reliable references for PKD without the hassle. It would be helpful for anyone who is searching for a wider variety of information about PKD.

“NIDDK Reference Collection.” 2008. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). 4 June 2008. http://catalog.niddk.nih.gov/resources/index.cfm.

Print Reference Books

2008-06-03T20:41:00.000-07:00

Polycystic Kidney Disease - A 3-in-1 Medical Reference

Within this 274-page book lies a lot of information about PKD. Searching the web for information on PKD can often be difficult and time consuming and this book tries to make the process easier by giving the most reliable sources and information. Like the title suggests, this book is good for physicians, patients, researchers and anyone else who is looking for the most advanced tools available for medical research.

Parker, Phillip M. Polycystic Kidney Disease – A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers. San Diego: ICON Group International, Inc. 2007.

Textbook of Peritoneal Dialysis

This text contains over 850 pages that can be used as a reference for all things pertaining to peritoneal dialysis – an option for some who suffer from PKD. Gokal and Nolph, two of the editors and contributing authors of the book are two of the foremost figures in the field of peritoneal dialysis. They combined with around 20 other authors to create this reference for people searching for PKD. There are several topics covered by the textbook, including the history of peritoneal dialysis, microcirculation, physiology, solutions and systems, usages by children or elderly, the quality of life and many more. This book would serve as a great reference for anyone who is looking for indepth and specific information on peritoneal dialysis. Because it was published in 2000, some of the facts and figures might be outdated by a few years but most of the core information should still be relevant.

Gokal, Ram, et al./ eds. Textbook of Peritoneal Dialysis. 2^nd ed. Norwell: Kluwer Academic Publishers, 2000.

Newspaper Articles

2008-06-03T20:12:00.000-07:00

"Surgeons perform first 6-way kidney transplant"

This AP article is a good example of the large need for kidney transplants in the country. It covers a story about six people who all have non-matching donor. Luckily these six donors each match one of the other six patients and the 12 undergo surgery at the same time. This story represents more than just the story of 12 people. It explains the process that over 200,000 Americans have undergone. It also provides details about the process of finding a donor, what doctors look for and why it is preferred to have a living donor rather than a deceased one. This article would provide good, recent information for individuals looking for more about kidney transplants. Because one of the options for PKD patients is kidney transplantation, this also provides a good resource to them.

Bazemore, John. “Surgeons perform first 6-way kidney transplant.” USA Today. 10 April 2008. 3 June 2008. http://www.usatoday.com/news/health/2008-04-08-hopkins-kidney_n.htm.

"Clinic fighting kidney failure in children"

This article highlights a new clinic that is opening in Wisconsin. The new nephrology clinic and lab will be located at Children’s Hospital in Wauwatosa and will specialize in pediatric kidney disease and developing therapies to prevent and treat the condition. The new clinic will be helpful because it will have about 80 employees that will study a wide range of topics that will hopefully provide breakthroughs in the field of kidney disease. This article would be useful for people interested in this new clinic and the results that it will produce. It would be especially useful to those who are located near the new clinic or those who are looking for help with pediatric kidney diseases, like ARPKD.

Newson, Kawanza. “Clinic fighting kidney failure in children.” The Milwaukee Journal Sentinel. 22 February 2008. 3 June 2008. http://search.ebscohost.com/login.aspx?direct=true&db=nfh&AN=2W62W61693665423&site=ehost-live

"Dialysis, where medicaid steps in."

This article from The New York Times follows a PKD patient who is on dialysis. The article goes on further about the connection between PKD and Medicare. According to the article, PKD happens to be the only chronic disease that Medicare pays for, making dialysis a big business. It also brings PKD into the eyes of tax payers because at the time of the article about six percent of the country’s Medicare budget was used to treat patients with end stage renal disease. This article is a good source for anyone searching for more information on the link between Medicare and PKD. The article also provides information about dialysis centers across America. While it is a few years old, the article still serves as a good source for PKD information.

Rubenstien, Carin. “Dialysis, Where Medicaid Steps In.” The New York Times. 25 Jan. 2004. 3 June 2008. http://query.nytimes.com/gst/fullpage.html?res=980CE1DA1638F936A15752C0A9629C8B63&sec=health&spon=&pagewanted=all.

Trade Magazine/Scholarly Articles

2008-06-02T22:37:00.000-07:00

"Treatment of autosomal dominant polycystic kidney disease (ADPKD)"

This scholarly article explores the genetic and molecular basis for PKD and reviews the clinical manifestations in children with ADPKD. Now that more is becoming known about the molecular basis, more targets for therapy are being discovered. These developments also help children with screening for PKD and for identification of high-risk individuals. This article would be helpful for anyone looking for a detailed description of the research being conducted in the genetics field. It might also prove useful for those with children who suffer from ADPKD because this new research has the potential to greatly change their lives.

Chapman, Arlene and Dana Rizk. “Treatment of autosomal dominant polycystic kidney disease (ADPKD): the new horizon for children with ADPKD.” Pediatric Nephrology. Vol. 23, No. 7. 2008. 1029-1036. Academic Search Complete. EBSCO. 3 June 2008.

"Bilateral laparoscopic nephrectomy for significantly enlarged polycystic kidneys"

This scholarly journal article is aimed at reducing the size of massively enlarged polycystic kidneys by a technique known as bilateral laparoscopic nephrectomy (BLN). The procedure would be used on symptomatic patients with ADPKD, which would include candidates for transplantation. This article follows a specific study done using BLNs. It would be a good source for those who are interested in research on reducing the size of polycystic kidneys. The massive size of infected kidneys is sometimes a problem for PKD sufferers and this research would help combat the massive size of the kidneys.

Desai, Premal J., et al. “Bilateral laparoscopic nephrectomy for significantly enlarged polycystic kidneys: a technique to optimize outcome in the largest of specimens.” BJU International. Vol. 101, No. 8. 2008. 1019-1023. Academic Search Complete. EBSCO. 3 June 2008.

"Polycystic kidney disease and the renal cilium"

In this article Deane and Ricardo report on their studies of PKD and a possible cause of PKD that results from a defect of the renal cilium. The article goes into details about the link between cilia and the different forms of PKD. The article sights a defective renal cilium as the cause of the cysts that form in the kidneys. This is still just a recent discovery in the field of PKD so the article provides a good resource for the new information. Their research comes from the Monash Immunology and Stem Cell Laboratories in Monach University, Australia.

Deane, James A., and Sharon D. Ricardo. “Polycystic kidney disease and the renal cilium” Nephrology. Vol. 12, No. 6. 2007. 559-564. Academic Search Complete. EBSCO. 16 April 2008.

Blogs

2008-06-01T23:52:00.000-07:00

Jack's Kidney Adventure

This blog follows the life of one man, Jack, who was diagnosed with PKD at the age of 50. Ten years later, Jack is now on a transplant list and must go to the hospital three times a week to receive hemodialysis. The blog begins in April of 2006 when Jack went for his first dialysis treatment. Since then, it has continued to follow his struggle between leading a normal life and going to dialysis, doctor appointments and the other things he must do because of his kidney disease. This blog is a good source for those who are interested in knowing more about the effects of PKD from the first person perspective. For people who are affected by PKD, it serves as a good resource to connect, learn from, and sympathize with someone else who is living with PKD. This blog should not be used by people looking for general facts and information about PKD because this follows an individual case and all cases are different.

Nowicki, Jack. “Jack’s Kidney Adventure.” 11 April 2006. PKD Foundation. http://jakidney.blogspot.com/2006_04_01_archive.html. 7 May 2008.

Kidneys and Eyes

This blog is written from the parents of two children suffering from Autosonomal Recessive Polycystic Kidney Disease (ARPKD). The blog chronicles their lives as they struggle to have a normal life while battling PKD. The blog is a useful site for those looking at a glimpse into the life of a child suffering from PKD. The older of the two children has even undergone dialysis treatment and a kidney transplant so this family has seen many of the issues that PKD patients deal with. The blog is also useful for other patients or family members of patients who are looking for someone going through similar things. While this source does provide good insight into PKD, the two children also suffer from an eye disorder known as Ocularmotor Apraxia and some of the children’s health issues are because of that disorder and not because of PKD.

“Kidneys and Eyes.” 25 May 2004. PKD Foundation. 1 June 2008. http://www.kidneysandeyes.com/.

Government Agencies

2008-06-01T23:25:00.000-07:00

U.S. Department of Health and Human Services

The U.S. Department of Health and Human Services is the principal agency in the U.S. for protecting the health of all Americans. There are over 300 programs associated with HHS, including health research, disease prevention, medicare and medicade. All of these programs would be of interest to someone with PKD or involved in PKD research. This site provides basic coverage for all the details of PKD and our government’s work to solve the problem.

U.S. Department of Health and Human Services Home Page. 2008. U.S. Department of Health and Human Services. 28 May 2008. https://www.hhs.gov/.

National Institutes of Health

The National Institutes of Health is a part of the U.S. Department of Health and Human Services. The NIH has been around for over a century and is the primary federal agency for conducting and supporting medical research, with 27 Institutes and Centers. This is a very good agency for finding the latest on PKD research and development because the NIH helps improve lives and save lives with the advancement of medical discoveries. The NIH website provides more extensive results than the HHS and is a good place to visit for anyone looking for reliable, factual and up-to-date information on PKD.

National Institutes of Health Home Page. 2008. National Institute of Health. 28 May 2008. http://www.nih.gov/.

Non-Profit Associations

2008-06-01T21:21:00.000-07:00

PKD Foundation

The PKD foundation is a public charity that is dedicated to promoting research to find a cure for polycystic kidney disease. Their web site serves as a Mecca for all things PKD. This includes information about the disease, up to date research, upcoming events and news releases. The web site also serves as a place for people to donate to the foundation and as a way to communicate and connect with others who are affected by PKD. The PKD Foundation has raised millions of dollars for PKD research and its web site is an extremely helpful resource for those who want to know what is going on with PKD right now.

PKD Foundation. 2007. 16 April 2008. www.pkdcure.org.

National Kidney Foundation

The National Kidney Foundation is a major voluntary health organization that seeks to prevent kidney and urinary tract diseases, which includes PKD. This organization also serves to help families and patients affected by these diseases and to help increase availability of organs for transplantation. Their website is a good place for people looking for information concerning the kidneys, their function or the diseases that could affect them. It has information about organ donations and ways to promote organ donation. The website also has information about current news, events and research. While this website is a good source for information about PKD or issues surrounding the disease, it isn’t devoted specifically towards PKD and contains some information that is irrelevant for those looking to learn just about PKD.

National Kidney Foundation. 2008. 1 April 2008. http://www.kidney.org.