CAP: Columbia University APBD Registry

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APBD Patient/Family Registry Completing the Physician Form |  Instructions to Enroll in the APBD Registry (CAP)

Go directly to the Columbia University APBD patient registry (CAP)

Join the APBD Registry (CAP)

Why have a registry

The newly established APBD patient registry (CAP) is critical to developing a treatment and cure for APBD and testing those treatments in clinical trials.  A robust patient registry demonstrates the commitment of the patient community to the pharmaceutical industry.  The registry enables researchers to develop and evaluate the natural history of the disease, showing the progression of the disease over time.  Periodical medical updates to a patient’s record is critical in the development of this natural history.
[youtubegallery]
APBDRF Next Steps: Patient Registry (2:28)| http://www.youtube.com/embed/yCcJOc0Zo4o
Richard Buchsbaum: Establishing APBD Registry (CAP) (2:05)| http://www.youtube.com/embed/pmI3U8QaIm4
Richard Buchsbaum: Significance of APBD Registry (CAP) (3:37)| http://www.youtube.com/embed/EbcUIm_BAGY
David: A patient discusses the importance of the Adult PB Disease Registry (2:30)| http://www.youtube.com/embed/c1hZWxVzWy8
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The APBD patient registry (CAP) is now open

The APBD Research Foundation and the Mailman School of Public Health at Columbia University, along with a team of international researchers and clinicians, is establishing and maintaining the first APBD Registry (CAP) as of May,1,2014. The team at Columbia is experienced in maintaining patient registries and follows Institutional Review Board (IRB) approved protocols to ensure security and privacy of registrant information. We will be collecting  demographic data, family history, clinical observations, and the results of physical and neurological examinations for the registry.  The APBD Registry is open to both APBD patients and their family members. 

Patients and their caregivers are encouraged to participate in the registry to aid the researchers studying the disease and the effects of various treatment programs. There are a number of promising research initiatives underway and the success of potential treatments will need to be tested over a period of time. The registry will enable the researchers to more effectively assess the results of upcoming treatment programs and will facilitate human trials in the foreseeable future.

Registrants have the option to enroll anonymously with your physician serving as your point of contact.

How is your information protected

  • Patient data is encrypted and stored in secured servers with 24×7 security by Columbia University
  • All data and web communications are encrypted
  • Access to the data is by authorized Columbia University personnel, using secured passwords
  • Only de-identified data is provided to authorized parties who have been approved by the APBD Research Foundation in accordance with federal regulations
  • Patients can request to enroll anonymously and/ or limit the data they provide
  • All direct communication with enrollees with done only through the Columbia team

APBD Patient/Family Registry Completing the Physician Form

Completing the form on paper

  1. Log in to the APBD web site
  2. Click on the “Exam(s)” tab at the top of the page.
  3. Click the “Download Physician Form” link.
  4. Save the APBD Physician Form (APBD_Phys_Form.pdf) to your computer.
  5. Open the physician form in Adobe Reader or Adobe Acrobat.
  6. Click the Printer icon to print the form.
  7. Give the printed form to your doctor to complete.For your convenience download clean physician form here


Completing the form electronically

  1. Log in to the APBD web site
  2. Click on the “Exam(s)” tab at the top of the page.
  3. Click the “Download Physician Form” link.
  4. Save the APBD Physician Form (APBD_Phys_Form.pdf) to your computer.
  5. Either email the file to your doctor, or copy the file to a portable USB drive (thumb drive) and give the thumb drive to your doctor.
  6. Ask your doctor to open the physician form in Adobe Reader or Adobe Acrobat.
  7. Have your doctor complete the form on their computer.
  8. When they attempt to close the file, the software will prompt them to save their changes.
  9. Ask your doctor to return the completed form to you, either by email or thumb drive.

 

Entering the information into the registry automatically

  1. Log in to the APBD web site
  2. Click on the “Exam(s)” tab at the top of the page.
  3. Click the Upload File button. When prompted, select the completed physician form and click “Open”.
  4. Click “Next” on the right side of the page to finish entering data into the registry.

 

Entering the information into the registry by hand

  1. Log in to the APBD web site
  2. Click on the “Exam(s)” tab at the top of the page.
  3. Click the View Data button.
  4. Enter the data from the physician form into the web site.
  5. Click “Next” on the right side of the page to finish entering data into the registry.

Instructions to Enroll in the APBD Registry (CAP)

To enroll in the APBD Registry (CAP)

  1. Go to the APBD Registry (CAP) web site
  2. Click on the red “Join the APBD Registry (CAP)” button
  3. Read the document titled “Understanding Your Participation”
  4. Complete the online Consent for Participation form, including providing a user ID, password and email address
  5. Click the “I Consent” button.For your convenience download Personal participant data form here

 

Now you have joined the APBD Registry (CAP)

  1. If you’d like researchers to contact you, enter your contact information, then click Next
  2. Enter some basic information about yourself, then click Next
  3. Enter information about how APBD has affected yourself and your family, then click Next
  4. Download a Physician Form and give it to your doctor to fill out (See additional instructions for options on filing out the Physician form.)
  5. Upload the Physician Form to the APBD Registry (CAP) web site, or click the “View Data” button and enter the information yourself

 

Remember, you don’t have to provide any information you don’t want to provide. You can join the Registry anonymously by simply skipping the contact information page. Please use the comment/question fields located on the bottom of most sections  for any clarification you think is necessary.

Join the APBD Registry (CAP)

Videos

David – A patient discusses the importance of the Adult Polyglucosan Body Disease Registry.

In this video David talks about the value of the Adult Polyglucosan Body Disease Registry.  After researching it, he learned that the importance of people participating in the registry is that when treatment trials are ready to begin, there will be  a ready population of APBD patients that can participate in those trials.

 

Richard Buchsbaum: Establishing APBD Registry (CAP)

Richard Buchsbaum is the Senior Data Manager at the Statistical Analysis Center/ Biostatistics Department Mailman School of Public Health Columbia University

In this video he talks about what an APBD patient registry (CAP) is.

In this video he talks about the significance and value of an APBD patient registry (CAP)


In this video he talks about what an APBD patient registry (CAP) is and the significance and value of an APBD patient registry (CAP).

Please watch Dr Kolodny’s short video about the importance of a patient registry

Join the APBD Registry (CAP)