Frequently Asked Questions

Explore the information in the FAQ to learn more about participating. Are you a researcher, healthcare provider or other professional? Sign up to view the de-identified data and learn about ways to partner with a registry at www.patientcrossroads.com.

Learn about the registry

What is a registry?

A registry is a place to store detailed medical information about people living with or at risk for a disease or other serious health condition.

Who can join the registry?

People living with or at risk of developing a health condition can participate in the registry. Children who are younger than 18 years of age, or adults who cannot make their own medical decisions, must have their legal guardian, parent, or custodian register on their behalf.

How does a CONNECT registry work?

With the CONNECT registries from PatientCrossroads, anyone with a condition can contribute information, and anyone who needs the information can access it. We’re making information as useful, comprehensive, and safe as it can possibly be. CONNECT registries are currently in place for hundreds of diseases, in partnership with non-profit groups, academic centers, research institutions, top pharmaceutical companies, and the NIH. Joining a CONNECT registry is a way for you to help improve the understanding of your health condition(s) and to help others, too.

Why is a patient registry important?

It takes whole communities to help people living with medical conditions lead healthier and happier lives. The more information we collect about an illness, the closer we can get to helping communities find treatments that work.

By collecting health information from as many people as possible, together we can make a difference. We can:

  • Study why individuals have different symptoms
  • Learn about how certain treatments work and don’t work
  • Help medical professionals improve how they treat affected individuals with the condition
  • Speed up research by collecting information that scientists can use
  • Let those living with health conditions (or their family) know when they may be eligible for research studies or clinical trials

Your Participation

Who will have access your registry information?

Only trained registry managers will have access to your identifying information. Your identity, such as your name or email address, is shared only if you request it. You can set your sharing preferences for each survey that you decide to complete. All personal identifiers, such as your name or email address, are removed before your answers are shared. Only PatientCrossroads will send you messages, in accordance with your contact preferences. PatientCrossroads takes your privacy very seriously. Read more about our security to see why we have been chosen to collect health information for the NIH, non-profit foundations, and Fortune 500 companies.

Patients own their data. Period. Patients opt in and choose to share their information, and they can just as easily opt out. We are grateful that so many registry participants are willing to share their information to support research.

How will your information be used?

We believe that open sharing of health information is how medical discoveries will happen, and we invite you to share and join the movement! To advance the understanding of various health conditions, we ask you to contribute your de-identified survey answers (no personal identity is shared) into the pool of other participant answers. Because all CONNECT registries share survey answers, the information is available to the greater medical community, including non-profit organizations, doctors, research scientists, medical investigators, regulatory agencies, pharmaceutical, biotech, and biomedical companies. Even non-profit groups that promote the registry need your permission to see the pool of survey answers from you and the other participants. As a participant you also have immediate access to the pool of survey answers.

How much time will this take?

Participating in the registry is simple and can be completed as you have time. In fact, you may learn a lot just from participating. After setting up the account, you can take health-related surveys. Surveys usually take only 5-10 minutes. Some surveys are shorter, some are longer. You can stop and return to a survey at any time. We will ask you to update some information in your account throughout the year.

Will you be expected to provide the registry with more information in the future?

Ideally, yes. The registry is most valuable when it is kept up-to-date. Therefore, you will be asked to update your information at least once a year. We will send you annual reminders. We may ask you to fax or upload relevant test results or other related reports. The registry can be updated anytime there is a health change.

Can you withdraw if you change your mind?

You can change your mind and withdraw your information from the registry at any time. Simply contact the registry coordinator and all of your information will be removed from the registry. De-identified information shared before you leave the registry cannot be recalled.

Does joining the registry guarantee a spot in a clinical trial?

One goal of the registry is to make it easier for people to participate in research; however, there is no guarantee that that you or your family member will be eligible for a clinical trial or study.

Remember, scientists cannot contact you directly. The registry coordinator will send you information about a study or trial by email. If you are interested, we will tell you how to get involved. Please also be aware that if we inform you about the existence of a study or trial, this does not imply that we endorse it or guarantee your acceptance. To participate in any trial, you will need to fill out a separate informed consent form.

Should you join if you don’t want to be involved in a clinical trial?

Absolutely! We hope that you will still register, even if you don’t want to take part in a study or trial. Your information can help the entire medical community, including yourself as well as people you’ve never met.

If you have joined another registry through your doctor or another researcher, is it OK to give your information to the registry now?

Yes!

If you are in a registry for a different condition, should you still join?

Yes, you can join registries for different conditions. Where possible, we will take care to make sure that information you give is not collected more than once in CONNECT registries.

I don't see a registry for my condition. How can I join anyway?

Sometimes a specific condition is not yet launched on CONNECT. Regardless, you can join the general CONNECT registry and become connected to the global health community. Tell us what conditions we should consider next. As relevant new registries open up, we will invite you to join.

Will it cost anything to be in this Registry?

No.

Using your account

What if I forget my username or password?

  1. Click "Forgot Login?" underneath the "Login" button on the upper right of the screen.
  2. Check the box for "Lost Username" or for “Lost Password”.
  3. Enter your information.
  4. Click "Send Username" or “Send Password”.
  5. Your username or temporary password will be sent to your email address.

 

How do I change my password? How do I change my email address?

  1. Login to your account.
  2. Click the button for My Account, if you are not automatically directed there.
  3. Click the tab for Account Info.
  4. Click the link for Update. The password and email fields are at the bottom of the page.
  5. Click the Update button once you have changed your password or email.

 

How do I update my survey or complete an annual update?

  1. Login to your account.
  2. Below the participant's name, locate the tab for "Surveys."
  3. Tip: If you have not completed the initial survey, you will be directed to take the survey automatically.
  4. To update a survey, click the name of the survey you want to update.
  5. Click the name of the survey, and then click the link to “Re-take the Survey”.
  6. Tip: Surveys that are incomplete will have a caution icon. Simply click the survey name to complete it.

How do I change an answer to a single question?

  1. Login to your account.
  2. Below the participant's name, locate the tab for "Surveys."
  3. Tip: If you have not completed the initial survey, you will be directed to take the survey automatically.
  4. Click the name of the survey that has the question you want to update.
  5. The sections in the survey are listed. Click the section name to see the questions in the section.
  6. Use the edit icon next to each question to update a single answer.
  7. Tip: For yearly updates, please choose the link to "Re-take the survey."

How do I see the answers in the registry?

  1. Login to your account.
  2. Click button for "View Data" and choose the section of interest to see the charts for each question.
  3. Tip: Don't see the charts? In order to see the survey results, you must complete the initial survey.
  4. Take more surveys, and see more charts!

Family members

Can you add your family members to your account?

If you are responsible for the medical care of other family members, you can add them to your registry account. First you can create your account and answer the survey. Then, click the Add a Family Member link on your account page to add other family members to your account.

What happens when your child turns 18 years old?

When a child who is registered turns 18 years old (and if they are able), they will be asked if they want to continue participating.

About Us

Who is PatientCrossroads?

Our registry programs enable anyone—from individual patients to global research organizations—to collect and share health information in a way that's controlled, transparent and centered on patients' best interests.

PatientCrossroads is the long-time leader in the field of patient-entered registries. As a company, we currently offer registries for 300+ conditions, on behalf of leading advocacy and research institutions, NIH, and Fortune 500 companies.

Why is PatientCrossroads launching CONNECT?

We've heard over and over that creating a shared registry of patients is one of the most valuable things a community can do. A registry puts critical information about a disease all in one place. This makes it easier for researchers to study the disease, for patients to learn about front-line treatments and for advocates to speak on behalf of the disease community. However, registries are costly and require on-going support and funding. The CONNECT registry enables patient communities, regardless of size and shape, to collect and share de-identified health information in a consistent and transparent manner.

What is our role?

PatientCrossroads is as the trusted third party gatekeeper of information, gathering data and ensuring its accessibility. The de-identified information is made broadly available to the greater medical community. PatientCrossroads will distribute relevant information and survey questions from registry data portal users to interested participants.

Who should you contact if you have any questions?

If you have any questions about participating, please This email address is being protected from spambots. You need JavaScript enabled to view it..