ADPKD Registry

What is ADPKD Registry?

The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD).

Answer survey questions

Answer survey questions about your experience with ADPKD

Keep information current

Update us on your quality of life and PKD symptoms throughout the year

Participate in research

Find out about research studies for which you might qualify

Why should you join?

Collect patient perspectives

PKD patients are experts of their own disease experience. This registry is patient-powered and patient-entered. You will answer questions about your own health and the impact PKD has had on your life. These data help create a key resource for researchers to better develop outcomes that reflect patient perspectives.

Power in numbers

The Registry is the first North American database of patients with ADPKD. With your help, we can collect information in a standardized format that tells us about the patient journey, unmet medical needs, patient preferences, and reveal more about the disease burden on your everyday lives and those of your families.

Advance research

There are estimated to be more than 600,000 Americans with ADPKD, but currently no nationwide resource is available to connect PKD researchers with people interested in participating in research. By joining the ADPKD Patient Registry, you enable us to help identify studies for which you may be eligible and connect you to details on how to participate.

It’s secure and easy to participate

The Registry is hosted on a secure platform that follows comprehensive measures to protect your information. Joining the ADPKD Patient Registry involves three steps:

  1. Create an online account
  2. Agree to an informed consent
  3. Complete the core questionnaire

This can all be done online and from the comfort of your own home on your computer, tablet or mobile phone.

View the ADPKD Patient Registry consent form. (En Español)

What should I expect once I log in?

When you log-in, modules will be featured on your home page to ask about your experiences with PKD. To ensure your privacy, your name will be separated from your answers before they are shared with researchers.

Core questionnaire

Core questionnaire

This module asks about your personal medical history and will take about 10–15 minutes to complete. Please make sure you know your:

  • Most recent kidney function lab values (creatinine and eGFR).
  • Year of diagnosis
  • Name of your physician and medical center
  • Month and year you began medication for high blood pressure (if applicable)
Pain and Discomfort Scale

Pain and Discomfort Scale

This module asks about your personal experience with pain over the past seven days and should take 5–10 minutes to complete. Your answers help us understand your pain (dull pain, sharp pain, and discomfort) from PKD.
If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you.
Vascular Outcomes

Vascular Outcomes

This module asks about your experience with brain, chest or abdominal aneurysms and could take 5–15 minutes, depending on your history. Make sure you know:

  • How your aneurysm was diagnosed or screened for (if applicable)
  • The size of your aneurysm, and treatment methods (if applicable)
  • Your family history of aneurysms
Family history

Family history

This module asks about your family history of ADPKD and should take up to 25 minutes, depending on your familiarity with your family’s experience with PKD. Think only of people you are related to by blood, including those living or deceased. Click here for a chart to see what kind of questions we’ll be asking.
Diet and lifestyle

Diet and lifestyle

This module asks about your diet and lifestyle and will take about 5–10 minutes to answer. We’ll ask about:

  • Any dietary supplements you take (ex: fish oil, folic acid)
  • Alcohol and caffeine consumption (coffee, tea and soda)
  • How much water you drink on an average day
  • Exercise habits
  • Food you exclude from your diet (ex: meat, eggs, salt)
Health care access and utilization

Health care access and utilization

This module asks about your experience accessing care for your PKD. It will take about 10-15 minutes to answer these questions. We will ask about:

  • The clinicians who manage your disease
  • The challenges you may have faced affording and accessing:
  • —Medications
    —Procedures
    —Dialysis and transplant services
    —Other medical costs

COVID-19 Impact

COVID-19 Impact

This module asks you about your experience so far in the COVID-19 pandemic and should take 5–15 minutes. We’ll ask about COVID-19 test results (if applicable), assistance applied for in the last six months, and how your medical care has changed due to COVID-19 challenges.
Impact scale

Impact scale

This module asks you about your personal experience with PKD over the past two weeks and will take 5–10 minutes to complete. Your answers will help us understand how physical, emotional, and fatigue impact your PKD.
Experience with liver cysts

Experience with liver cysts

About your medical history with liver cysts (5–10 minutes). Make sure you know:

  • How your liver cysts were discovered
  • Issues you believe to be due to liver cysts
  • Medication you’re taking for your liver cysts

Research findings

PKDF presented a poster at the American Society of Nephrology’s 2020 Kidney Week, along with members of the Patient Registry Advisory Committee.

An article by PKD Foundation’s Vice President of Research Programs, Elise Hoover, was published in Kidney360 titled "Design and basic characteristics of a national patient-powered registry in ADPKD."

FAQs

What is this registry about?

The purpose of the ADPKD Registry is to create a patient network of individuals with autosomal dominant polycystic kidney disease (ADPKD). You are asked to answer surveys online that can inform new research to improve ADPKD patient outcomes and quality of life, learn more about the patient journey, and discover unmet medical needs. ADPKD Registry keeps information in one place making it easier for researchers to utilize Registry information while protecting the privacy of those who take part.

Am I eligible to enroll?
United States residents of all ages with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) are invited to join the Registry. Patients under 18 years of age may also join with the assistance (assent) of a parent or legal guardian.

If you do not have an official diagnosis, but have a family history and suspect that you have PKD, you are welcome to join and will need to agree to notify Registry staff of your diagnosis if/when it becomes available.

If you, or someone you know, has autosomal recessive polycystic kidney disease (ARPKD), our collaborators at the University of Alabama at Birmingham and Children’s National Medical Center have created a database with specific emphasis on ARPKD. If you have questions or would like to enroll yourself or your child (alive or deceased) as a part of the ARPKD Database, please contact:

  • Principal Investigator: Lisa Guay-Woodford, MD at 202.476.6439, or
  • Research Coordinator: Jasmine Jaber at 202.476.2838, jjaber@childrensnational.org, or
  • Research Coordinator: Elena Gibson at 202.476.2197, egibson@childrensnational.org
Should I join if I am post-transplant?
Yes! Your data is valuable to research regardless of whether you have had a transplant and/or no longer have your PKD kidneys.
Who is paying for this Registry?
The Registry is fully funded by the PKD Foundation and there is no charge for participation. Support for the Registry may come from individual donors, other foundations, corporations, pharmaceutical companies or other collaborators.
How long will I be in the Registry?
If you decide to join this Registry, your participation will last as long as the Registry is active or until you decide to withdraw from the Registry.
What types of data are collected in the ADPKD Patient Registry?
  • Socio-demographics
  • Medical and diagnosis
  • Treatment and PKD progression
  • Management of PKD-related symptoms
  • Quality of life
How is the data collected?
Data is collected through a secure web-based system developed by the PKD Foundation and IQVIA, a Contract Research Organization (CRO) and registry platform company dedicated to advancing clinical research — including that of patient registries. Registry participants respond to questions grouped within a series of surveys designed to collect information about ADPKD multiple times per year. You will receive email alerts from the ADPKD Registry staff when new surveys are available.

You can choose to answer all, any, or none of the survey questions. Whatever data you provide helps to create a more detailed picture of the PKD disease experience.

Do I need to come in for study visits?
No, this is not a treatment study. You will be asked questions about your treatment, but no in-person visit is necessary. All information is collected via the online patient portal.

 

Do I have to be in this Registry?
Your participation in the Registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the Registry.

 

Is my information secure?
Yes, the ADPKD Registry follows strict government guidelines to assure patient information is protected. An Investigational Review Board (IRB) has approved this Registry. Your personal information will be stored in a secure database and protected with a password. When you join, the Registry will assign you a unique numeric identifier. Only authorized people who work in the Registry will be able to connect this identifier to your name and contact information. To protect your confidentiality, we will use only secure computers and secure means of analyzing your information.

 

How will I learn about clinical studies?
The ADPKD Patient Registry will also serve as a recruitment database that can be used to connect you with leading researchers of studies that you may be eligible for. If researchers cannot find enough patients to join a study, this can delay discoveries that can benefit the ADPKD community. Your participation will help the community accelerate these discoveries and drive research towards new treatments and a cure. Researchers will never contact you directly. The ADPKD Patient Registry staff will contact you with information about a study by email or through your patient portal. It is then up to you if you want to participate or would like additional information.

The ADPKD Patient Registry will also share data with researchers to speed the development of new discoveries and therapies. The information you provide will become de-identified information, and only de-identified information will be shared with researchers. Your data also helps drug developers know the size of the ADPKD population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.

Who will be able to see my answers to the survey questions?
We’re using a specific platform that separates all identifying data and stores it in a secure place. Only PKDF Registry staff can access it and it will not be shared. This information includes name, date of birth, address (we only share city and state), and contact information. When we share information for research purposes, no one is able to identify you or your family based on your answers to our surveys.
What if I’m already enrolled in a local registry or clinical study?
You may participate in more than one registry. The ADPKD Registry is unique in that patients (not clinicians) are asked to provide their medical information directly, and answer questions about quality of life and the disease experience. We want to hear directly from you!

The ADPKD Registry may explore and pursue opportunities to coordinate efforts with other studies and databases. If that happens, you will be asked to provide specific permission to do so.

How do I sign up?
Sign up online here. You’ll be asked to create an online account and agree to our consent form. Once signed up, you’ll be asked to complete a few questionnaires about your diagnosis, symptoms and family history.

ADPKD Registry

What is ADPKD Registry?

The ADPKD Registry is a collection of individuals with autosomal dominant polycystic kidney disease (ADPKD).

Answer survey questions

Answer survey questions about your experience with ADPKD

Keep information current

Update us on your quality of life and PKD symptoms throughout the year

Participate in research

Find out about research studies for which you might qualify

Why should you join?

Collect patient perspectives

PKD patients are experts of their own disease experience. This registry is patient-powered and patient-entered. You will answer questions about your own health and the impact PKD has had on your life. These data help create a key resource for researchers to better develop outcomes that reflect patient perspectives.

Power in numbers

The Registry is the first North American database of patients with ADPKD. With your help, we can collect information in a standardized format that tells us about the patient journey, unmet medical needs, patient preferences, and reveal more about the disease burden on your everyday lives and those of your families.

Advance research

There are estimated to be more than 600,000 Americans with ADPKD, but currently no nationwide resource is available to connect PKD researchers with people interested in participating in research. By joining the ADPKD Patient Registry, you enable us to help identify studies for which you may be eligible and connect you to details on how to participate.

It’s secure and easy to participate

The Registry is hosted on a secure platform that follows comprehensive measures to protect your information. Joining the ADPKD Patient Registry involves three steps:

  1. Create an online account
  2. Agree to an informed consent
  3. Complete the core questionnaire

This can all be done online and from the comfort of your own home on your computer, tablet or mobile phone.

View the ADPKD Patient Registry consent form. (En Español)

What should I expect once I log in?

When you log-in, modules will be featured on your home page to ask about your experiences with PKD. To ensure your privacy, your name will be separated from your answers before they are shared with researchers.

Core questionnaire

Core questionnaire

This module asks about your personal medical history and will take about 10–15 minutes to complete. Please make sure you know your:

  • Most recent kidney function lab values (creatinine and eGFR).
  • Year of diagnosis
  • Name of your physician and medical center
  • Month and year you began medication for high blood pressure (if applicable)
Pain and Discomfort Scale

Pain and Discomfort Scale

This module asks about your personal experience with pain over the past seven days and should take 5–10 minutes to complete. Your answers help us understand your pain (dull pain, sharp pain, and discomfort) from PKD.
If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you.
Vascular Outcomes

Vascular Outcomes

This module asks about your experience with brain, chest or abdominal aneurysms and could take 5–15 minutes, depending on your history. Make sure you know:

  • How your aneurysm was diagnosed or screened for (if applicable)
  • The size of your aneurysm, and treatment methods (if applicable)
  • Your family history of aneurysms
Family history

Family history

This module asks about your family history of ADPKD and should take up to 25 minutes, depending on your familiarity with your family’s experience with PKD. Think only of people you are related to by blood, including those living or deceased. Click here for a chart to see what kind of questions we’ll be asking.
Diet and lifestyle

Diet and lifestyle

This module asks about your diet and lifestyle and will take about 5–10 minutes to answer. We’ll ask about:

  • Any dietary supplements you take (ex: fish oil, folic acid)
  • Alcohol and caffeine consumption (coffee, tea and soda)
  • How much water you drink on an average day
  • Exercise habits
  • Food you exclude from your diet (ex: meat, eggs, salt)
Health care access and utilization

Health care access and utilization

This module asks about your experience accessing care for your PKD. It will take about 10-15 minutes to answer these questions. We will ask about:

  • The clinicians who manage your disease
  • The challenges you may have faced affording and accessing:
  • —Medications
    —Procedures
    —Dialysis and transplant services
    —Other medical costs

COVID-19 Impact

COVID-19 Impact

This module asks you about your experience so far in the COVID-19 pandemic and should take 5–15 minutes. We’ll ask about COVID-19 test results (if applicable), assistance applied for in the last six months, and how your medical care has changed due to COVID-19 challenges.
Impact scale

Impact scale

This module asks you about your personal experience with PKD over the past two weeks and will take 5–10 minutes to complete. Your answers will help us understand how physical, emotional, and fatigue impact your PKD.
Experience with liver cysts

Experience with liver cysts

About your medical history with liver cysts (5–10 minutes). Make sure you know:

  • How your liver cysts were discovered
  • Issues you believe to be due to liver cysts
  • Medication you’re taking for your liver cysts

Research findings

PKDF presented a poster at the American Society of Nephrology’s 2020 Kidney Week, along with members of the Patient Registry Advisory Committee.

An article by PKD Foundation’s Vice President of Research Programs, Elise Hoover, was published in Kidney360 titled "Design and basic characteristics of a national patient-powered registry in ADPKD."

FAQs

What is this registry about?

The purpose of the ADPKD Registry is to create a patient network of individuals with autosomal dominant polycystic kidney disease (ADPKD). You are asked to answer surveys online that can inform new research to improve ADPKD patient outcomes and quality of life, learn more about the patient journey, and discover unmet medical needs. ADPKD Registry keeps information in one place making it easier for researchers to utilize Registry information while protecting the privacy of those who take part.

Am I eligible to enroll?
United States residents of all ages with a diagnosis of autosomal dominant polycystic kidney disease (ADPKD) are invited to join the Registry. Patients under 18 years of age may also join with the assistance (assent) of a parent or legal guardian.

If you do not have an official diagnosis, but have a family history and suspect that you have PKD, you are welcome to join and will need to agree to notify Registry staff of your diagnosis if/when it becomes available.

If you, or someone you know, has autosomal recessive polycystic kidney disease (ARPKD), our collaborators at the University of Alabama at Birmingham and Children’s National Medical Center have created a database with specific emphasis on ARPKD. If you have questions or would like to enroll yourself or your child (alive or deceased) as a part of the ARPKD Database, please contact:

  • Principal Investigator: Lisa Guay-Woodford, MD at 202.476.6439, or
  • Research Coordinator: Jasmine Jaber at 202.476.2838, jjaber@childrensnational.org, or
  • Research Coordinator: Elena Gibson at 202.476.2197, egibson@childrensnational.org
Should I join if I am post-transplant?
Yes! Your data is valuable to research regardless of whether you have had a transplant and/or no longer have your PKD kidneys.
Who is paying for this Registry?
The Registry is fully funded by the PKD Foundation and there is no charge for participation. Support for the Registry may come from individual donors, other foundations, corporations, pharmaceutical companies or other collaborators.
How long will I be in the Registry?
If you decide to join this Registry, your participation will last as long as the Registry is active or until you decide to withdraw from the Registry.
What types of data are collected in the ADPKD Patient Registry?
  • Socio-demographics
  • Medical and diagnosis
  • Treatment and PKD progression
  • Management of PKD-related symptoms
  • Quality of life
How is the data collected?
Data is collected through a secure web-based system developed by the PKD Foundation and IQVIA, a Contract Research Organization (CRO) and registry platform company dedicated to advancing clinical research — including that of patient registries. Registry participants respond to questions grouped within a series of surveys designed to collect information about ADPKD multiple times per year. You will receive email alerts from the ADPKD Registry staff when new surveys are available.

You can choose to answer all, any, or none of the survey questions. Whatever data you provide helps to create a more detailed picture of the PKD disease experience.

Do I need to come in for study visits?
No, this is not a treatment study. You will be asked questions about your treatment, but no in-person visit is necessary. All information is collected via the online patient portal.

 

Do I have to be in this Registry?
Your participation in the Registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the Registry.

 

Is my information secure?
Yes, the ADPKD Registry follows strict government guidelines to assure patient information is protected. An Investigational Review Board (IRB) has approved this Registry. Your personal information will be stored in a secure database and protected with a password. When you join, the Registry will assign you a unique numeric identifier. Only authorized people who work in the Registry will be able to connect this identifier to your name and contact information. To protect your confidentiality, we will use only secure computers and secure means of analyzing your information.

 

How will I learn about clinical studies?
The ADPKD Patient Registry will also serve as a recruitment database that can be used to connect you with leading researchers of studies that you may be eligible for. If researchers cannot find enough patients to join a study, this can delay discoveries that can benefit the ADPKD community. Your participation will help the community accelerate these discoveries and drive research towards new treatments and a cure. Researchers will never contact you directly. The ADPKD Patient Registry staff will contact you with information about a study by email or through your patient portal. It is then up to you if you want to participate or would like additional information.

The ADPKD Patient Registry will also share data with researchers to speed the development of new discoveries and therapies. The information you provide will become de-identified information, and only de-identified information will be shared with researchers. Your data also helps drug developers know the size of the ADPKD population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.

Who will be able to see my answers to the survey questions?
We’re using a specific platform that separates all identifying data and stores it in a secure place. Only PKDF Registry staff can access it and it will not be shared. This information includes name, date of birth, address (we only share city and state), and contact information. When we share information for research purposes, no one is able to identify you or your family based on your answers to our surveys.
What if I’m already enrolled in a local registry or clinical study?
You may participate in more than one registry. The ADPKD Registry is unique in that patients (not clinicians) are asked to provide their medical information directly, and answer questions about quality of life and the disease experience. We want to hear directly from you!

The ADPKD Registry may explore and pursue opportunities to coordinate efforts with other studies and databases. If that happens, you will be asked to provide specific permission to do so.

How do I sign up?
Sign up online here. You’ll be asked to create an online account and agree to our consent form. Once signed up, you’ll be asked to complete a few questionnaires about your diagnosis, symptoms and family history.

RAISE YOUR VOICE WITH US ON SEPT. 4

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What is PKD Awareness Day?

Sept. 4 is PKD Awareness Day, a day to educate and inspire. There are many ways to show support — wear teal, spread the word, donate, volunteer, advocate.

Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure. With 600,000 Americans and millions worldwide living with PKD today, chances are high that you know someone with the disease.

Why raise PKD awareness?

The more people who know about PKD, the more people will want to get involved. And that means more resources we can dedicate to finding treatments and a cure. PKD Awareness Day is our opportunity to step up our efforts. It gives us a platform to share stories and encourage others to learn more. Let’s come together as a united front to spread the word wider than we ever have before.

Raise your voice online using #PKDAwarenessDay.

Awareness Checklist

Update your social media profiles and post about why we need to build awareness and support. We’ve gathered the following resources for you to share on social media to help you get started:

  • Social profile pictures
  • Social graphics
  • Infographic
  • Videos

What the PKD community wants you to know about polycystic kidney disease:

That it is an invisible disease. Just because someone looks fine on the outside doesn’t mean their insides are being torn up.
Research can and will save lives.
It affects people’s quality of life.
That is affects hundreds of thousands of people in the US and millions worldwide. Everyone probably knows someone with PKD even if they don’t know it.
That it is one of the most common genetic diseases affecting many people in our community.
The illness that is hidden to other peoples eyes, and the pain and rollercoaster it is for the person suffering with this disease.
How truly devastating this disease can be for a family.
The different scenarios there are with ARPKD. Children living with the disease and infants passing from the disease.
That just because it’s not something you can physically see doesn’t mean the person isn’t going through it.
That getting the best medical care and having a strong support network is vital to navigating PKD.
I wish people knew how strong the families who are effected by PKD are. We are the strongest people who are ready for a cure and will take every step necessary to help all who are effected by PKD.
I wish people knew how far reaching into the generations of families and friends of those battling PKD leaves in its trail!
I wish more people understood how debilitating this disease can be some days, when the rest of the time you look totally ‘normal.’
That for many it’s an invisible illness, that can stop life in its tracks when it catches up with you.
Knowing the symptoms associated with PKD. Being more understanding of what we’re going through.
PKD is a dynamic disease and is different for everyone. Talking about treatment and prevention in many perspectives and situations is indispensable.
I wish everyone that is around people that have PKD to be more understanding of the symptoms that vary day to day.
Organ donation is so key for those of us with this disease!
I wish people knew more about how PKD affects families and friends, not just the person with PKD!
It’s emotionally and physically challenging.
It is frightening thinking every day your kidneys are filling up just a little bit more. And you just have to hope it goes slow enough to live your whole life.
That it is the most common genetically inherited disease, yet so few people know about it. That it affects my family, and probably more families than we realize. That there is no cure and we need one!
That the cysts are not your average cysts.
How it truly effects people and what they go through just to do normal tasks. That effects more people than you know and that the people who are living with it are true warriors.
How many lives are taken by ARPKD.
PKD will eventually lead to dialysis or a transplant but it is a different time frame for each individual.
Just because you can’t see the illness doesn’t mean it isn’t real. And no, cranberry juice won’t make it go away.
I just wish people knew that you don’t have to look sick to be going through a disease.
PKD doesn’t discriminate on race gender or age! PKD effects everyone differently!
That even though you don’t look sick it can be very painful.
The every day struggle of living with it and balancing it.
That there is more than just bad kidneys. How some days it messes with everything.
PKD advances diffently in each patient!
That it’s not easy to live with but is manageable.
That it is more common than we think. And that are people working towards a treatment.
How painful and stressful the symptoms can be.
Don’t judge a book by its cover. We go about our daily lives looking and acting healthy on the outside, but have miserably large, painful, cystic kidneys that aren’t working as they should on the inside or worse – kidneys that do not work at all.
That it is different from polycystic ovaries. The amount of times a doctor has got confused thinking I have polycystic ovaries is unreal!
I wish we could educate people that our kidneys are incredibly complicated organs and a failing polycystic kidney will affect endless numbers of metabolic systems in the body … despite this, so many PKD patients display remarkable resilience.
More than one person in a family can be diagnosed with PKD. BUT we are family and we will never give up!!

GO TEAL FOR PKD

Teal is the official color of polycystic kidney disease. Go teal this PKD Awareness Day and raise some noise on social media! 

Use our custom profile frame to show your friends online that you’re serious about PKD awareness.
Get your gear from our online store to show family, colleagues and everyone you meet that you support our cause.
Download and share our end PKD icon across your social media profiles to spread the word.

SHARE THE FACTS

Awareness starts with education – help us educate more people nationwide about PKD! When you share these videos and graphics with your friends, you can spread the word about how PKD impacts the lives of patients, families and caregivers.

VOICES OF PKD

Members of the PKD community are resilient, courageous and strong. Read stories about men, women and children living with PKD.
"Today, all the more, I live my life to the fullest. I choose joy instead of fear. I declare joy over sadness."

"I donated my kidney to a stranger April 2017. I have been a nephrology nurse for over 30 years and understand the challenges of living on dialysis. Also, my husband and daughter have polycystic kidney disease."

"To have an incurable disease can sometimes feel unbearable, but it can also make you humble and strong, just like my dad!"

“The PKD Foundation has been a source of hope. My hope for the future is that a cure for ARPKD is discovered."

Raise your voice! Share your PKD story to put a face and a name to this disease and help others learn why raising awareness is so important.

TAKE ACTION

Walk with us

A cure is our finish line. Find your local Walk for PKD and help us move PKD research forward.

Raise the stakes nationwide

Join our voice on the Hill to help educate your elected officials about how they can help end PKD!

Get involved

Become a volunteer with your local Chapter to help support others in your area impacted by PKD and make a difference!

You can make a difference! When you give to the PKD Foundation, you further our mission to give hope by helping us fund research, advocate for patients and build a community for all impacted by polycystic kidney disease (PKD).