RDCRN Contact Registry
The Rare Diseases Clinical Research Network (RDCRN) is a national network of top rare diseases researchers, powered by patient partnerships and funded by the National Institutes of Health. The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about our research. It connects patients with researchers in order to advance rare diseases research. Future research may produce helpful information for those with rare diseases.
What is the RDCRN Contact Registry?
A contact registry is a database that collects and stores information about patients diagnosed with specific diseases. The RDCRN Contact Registry connects interested patients to clinical trials (research studies) underway within the RDCRN. It also allows the RDCRN and RDCRN-affiliated consortia (research groups) and patient advocacy groups to share information about their research with interested patients and others.
Why should I join the RDCRN Contact Registry?
Joining the RDCRN Contact Registry allows you to connect with the larger RDCRN community. You will learn about opportunities to participate in RDCRN research and receive information about our work. You may be invited to join a research study. You could be invited to serve as a control subject for a study (part of a comparison group) or respond to a survey. You can share your contact information with RDCRN-affiliated consortia and patient advocacy groups. You can also subscribe to the RDCRN newsletter to learn more about our work.
What is the Rare Diseases Clinical Research Network (RDCRN)?
The RDCRN is a research network funded by the National Institutes of Health (NIH). It fosters research to better understand, diagnose, and treat rare diseases. Our 20 consortia—teams of scientists, physicians, and patients—each study a group of related rare diseases. New consortia dedicated to studying different diseases can apply to join the network at the start of each five-year funding cycle. Established by Congress under the Rare Diseases Act in 2002, the RDCRN is an initiative of the Division of Rare Diseases Research Innovation at the NIH’s National Center for Advancing Translational Sciences (NCATS).
How is the RDCRN advancing rare diseases research?
RDCRN consortia are studying nearly 200 rare diseases at more than 270 sites in the United States and around the world. We host the tools and services needed to make large-scale research studies possible. We also directly interact with patients and their advocates and train new investigators (scientists and doctors) in rare diseases research.
Understanding the Registry
What is the purpose of the Registry?
The Registry collects and maintains the contact information of people who want to:
- Receive information about rare diseases research
- Learn about opportunities to participate in research
It allows patients and others to connect with research teams and patient advocacy groups focused on particular diseases. The Registry supports the dissemination of information relevant to the RDCRN community. It also offers RDCRN investigators and patient advocacy groups access to data that will help them assess the feasibility of conducting a proposed study.
What conditions are rare diseases?
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. The NIH’s Genetic and Rare Diseases Information Center hosted by NCATS offers information on nearly 7,000 rare diseases.
Who is maintaining the Registry?
The Rare Diseases Clinical Research Network (RDCRN) and its Data Management and Coordinating Center based at Cincinnati Children’s Hospital Medical Center is managing the Registry.
Joining the Registry
Who can participate?
You can join the Registry if you are 18 years of age or older and have a rare disease, are a caregiver for someone with a rare disease, or are an unaffected individual.
How can I join the Registry?
Complete a short online registration form to join the Registry.
What will I be asked in the registration form?
You will be asked to share your contact information, including your:
- Phone number
- Disease diagnosis
You will also be able to select the RDCRN consortia and patient advocacy groups with which you would like to share your information.
What diseases does the RDCRN study?
Use the search tools on our Diseases Studied page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.
Why is my rare disease missing from the registration form’s dropdown list?
There are approximately 7,000 rare diseases. If your rare disease is not included in the dropdown list, please choose “Other / My rare disease is not in the list” and enter your disorder in the text field below. Our team is updating the dropdown list as we receive responses.
Why should I join the Registry if my disease is not currently studied by the Network?
Joining the Registry gives you an opportunity to join the larger RDCRN community, an NIH-funded, patient-empowered network of top researchers in the field. Your disease may be similar to others we are studying. Future research may produce information that will be helpful. You may be able to contribute to rare diseases research by serving as a control subject or responding to surveys of rare disease patients. You will have the option to share your contact information with our consortia and patient advocacy groups. You can also subscribe to the RDCRN newsletter to follow our latest work. In addition, new consortia studying different rare diseases have the opportunity to apply for funding through the RDCRN every five years.
How can people with undiagnosed diseases fill out the registration form?
In the disease dropdown list, please choose “Other / My rare disease is not in the list” and type “Undiagnosed” in the text field below.
Can I exit the registration form before it is complete and return to finish it later?
Yes. First, be sure that you have entered an email address for yourself. Then, click on the button at the bottom of the screen that says “Save and Return Later.” You will receive an email with your unique survey link. Please save this email. You can continue where you left off in the future by clicking the link in that email and entering your email address, first name, or current city.
What will happen next?
When you complete the registration form, you will be able to select the RDCRN consortia and patient advocacy groups that are of interest to you. Your contact information will be shared with the groups you select, which may include consortia (research teams) or patient advocacy groups (PAGs) (nonprofit organizations that provide information and services to those with rare diseases and their families). These groups may contact you in the future to participate in research studies. Click here to complete the registration form.
Does joining the Registry guarantee my spot in a clinical trial?
No. Joining the Registry may allow you to participate in clinical trials, but does not guarantee that you will be eligible.
When will the Registry close?
The Registry does not have an end date. It will remain open for the duration of the RDCRN.
Registration Before July 2019
I already registered for the RDCRN Contact Registry. Why do I have to sign up again?
The previous Registry was housed at the University of South Florida and was not transferred to the new Data Management and Coordinating Center (DMCC), which is now housed at Cincinnati Children’s Hospital Medical Center. The new Registry is built on a platform that will be transferable to other institutions if the DMCC changes in the future.
What happened to the information I submitted to the Registry prior to July 2019?
The information provided in the prior Registry is maintained and kept by the University of South Florida. Your information may be uploaded to the new Registry by your consortium, but you are encouraged to register again. Uploaded information will be cross-checked to ensure there are not duplicated participants.
Will you or your child be paid?
Participants will not receive payment for entering the Registry.
How will my contact information be used?
During the registration process, you will have the option to give permission for your data to be shared with consortia and/or patient advocacy groups. Consortia and patient advocacy groups are not allowed to share your contact information with entities, such as pharmaceutical companies, unless they receive your consent to do so.
The RDCRN consortia and patient advocacy groups may contact you to share information about their organization and/or new research studies. They may also contact you to receive your permission for a potential new use for your information. No research will be done on the contact information you provide when you initially register.
Who has access to my contact information in the Registry?
Only consortia and patient advocacy groups affiliated with the RDCRN may access contact information stored in the Registry. They must submit a request to the RDCRN Contact Registry Oversight Committee for approval. They must have a completed data use agreement in place with the RDCRN Data Management and Coordinating Center (DMCC) before any information will be released.
If you opt to share your contact information directly with a consortium or patient advocacy group, that organization’s data sharing and management policies will apply.
How will my data be protected?
The Registry database is built in REDCap, a secure, web-based platform. All RDCRN systems housed at Cincinnati Children’s Hospital Medical Center use centrally managed endpoint protections (including anti-virus, traffic monitoring, and behavioral analysis as appropriate) with continuous updates. The DMCC is separated by network segmentation and firewalls from other networks, and the greater Cincinnati Children’s network is protected from external networks by firewalls, traffic analysis systems, and application gateways. The RDCRN environment is protected by both Amazon Web Services (AWS)-provided isolation as well as firewall and network segmentation.
What if I am a resident of the European Union?
By registering, you are providing consent for the NIH-designated RDCRN Data Management and Coordinating Center (DMCC) in the United States to process your personal data, such as your name and contact information, for the purpose of contacting you about rare diseases research for the duration of the Registry project. With your permission, your personal data may be shared with other researchers. You may be asked if you would like to consent to participate in research studies. Please complete this form or email firstname.lastname@example.org with questions, to request to view or edit your personal data, to withdraw your consent, or to request that your data be removed. You may contact the data supervisory authority in your country if you have a complaint about the processing of your personal data.
Withdrawing Contact Information
What if I want my information removed from the Registry?
If you would like your information removed from the Registry, please complete this form or email email@example.com. The Registry team will remove your information from the main Registry. If you chose to have your information shared with patient advocacy groups or consortia, you will need to contact those groups separately.
Requesting Information From the Registry
How can our group participate in the Registry?
To explore partnering for data collection on a particular patient population, please complete this form or email firstname.lastname@example.org. However, in order to request data from the Registry, your group must be a current RDCRN-affiliated consortium or patient advocacy group.
Requests can be submitted via email to email@example.com and will be reviewed by the RDCRN Contact Registry Oversight Committee. Prior to receiving any data, your group will need to complete a data use agreement with the RDCRN Data Management and Coordinating Center (DMCC) to ensure proper use and handling of the Registry data.