Global RRPF/CoRDS RRP Patient Registry
instructions for registering with RRP Registry/CoRDS
Help us bring patients, families, and researchers together to gain a better understanding of Recurrent Respiratory Papillomatosis. If you or a family member has been diagnosed anywhere in the world with Recurrent Respiratory Papillomatosis, please enroll in the patient registry to make an important contribution to Recurrent Respiratory Papillomatosis research. This registry collects information from people with Recurrent Respiratory Papillomatosis to improve our understanding of the condition.
Please click the blue CoRDS box below on the left to enroll. You can watch a short video about CoRDS by clicking on the black box on the right.
Each participant is assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect the patient’s privacy. This means that your name and other identifying information will not be passed on.
The de-identified data will be shared only with researchers approved by Sanford’s Scientific Advisory Board (SAB).
The registry is compliant with the European Union General Data Protection Regulation (GDPR).
Importantly, the participant owns his/her personal data and can withdraw the data from the registry at any time.
There is no cost to the participants.
Providing your consent to (insert advocacy group) to have access to the data you provide will allow us to better understand (insert rare condition), help us understand where to drive our research initiatives, and let us know how patients need more support.
Enrollment Instructions- Let's get started!
If you would like to enroll and complete the RRP Patient Registry/CoRDS Questionnaire online, you may do so by following the instructions below. The registry works best with updated versions of Google Chrome, Mozilla Firefox or Microsoft Edge and may not work as well with a phone or tablet. You may also complete registration on paper by calling CoRDS at
Set Up A CoRDS Profile
Complete the CoRDS activation form. Please use a desktop/laptop computer or tablet.
The system will generate a username for you based on your name. You will need to create a password and setup a security question. Once completed, click the LOGIN button to login to your RRP Patient Registry/CoRDS Profile.
Frequently Asked Questions
What is a patient registry?
A registry is a program for collection, storage, retrieval, and dissemination of clearly defined information for a specific purpose. Data collected in this registry includes diagnosis and treatment, management of care, quality of life and longitudinal information for (insert rare condition).
Why a Recurrent respiratory papillomatosis registry?
In one word, PROGRESS. Having a registry specifically for individuals with Recurrent respiratory papillomatosis allows approved researchers to have easy access to useful medical data on many individuals with RRP. Since we will have already collected this data and obtained your consent to share it, researchers can begin to develop better studies much more quickly, and more easily find participants for these studies.
Who should participate?
Everyone with RRP! Participating in the RRP Patient Registry/CoRDS is a great way for participants to take part in helping to identify the specific causes, symptoms, and treatments of Recurrent respiratory papillomatosis.
Is personal information safe?
Internet polls, questionnaires, and surveys are often used to collect information quickly and easily from respondents. However, to publish their results, researchers must only use information obtained in a specific way. The patient data they use must have written approval from patients to use their data this way and must adhere to strict privacy regulations. The registry is compliant with the European Union General Data Protection Regulation (GDPR). RRP Patient Registry/CoRDS has worked hard to ensure that researchers can use the information you provide.
CoRDS submits every questionnaire to their Institutional Review Board approval. The IRB is group that reviews the ethics of medical research studies.
Informed consent also safeguards participant data. When registering to participate in RRP Patient Registry/CoRDS, participants (or their representatives) are given a chance to read the consent documentation before filling out the questionnaire. For any questions, participants can call RRP Patient Registry/CoRDS at + 1 877 658-9192 or send an email email@example.com..
If researchers receive approval to look at the registry or questionnaire responses, they will be given only the anonymous data without the identifiable information. The (insert advocacy group) can only access your identifiable information if you choose to share it with us when you complete your registry questionnaire.
Your privacy is also protected even if you indicate that you are willing to be contacted for additional research. For example, a researcher might contact RRP Patient Registry/CoRDS to ask for additional information from all participants who have a specific symptom, such as loss of hearing. RRP Patient Registry/CoRDS would then contact every participant in the registry who said that they had loss of hearing and that they would like to participate in additional studies. CoRDS would then provide these people with the researcher’s contact information, and it would be up to the individual participants to contact the researcher to participate in additional research. RRP Patient Registry/CoRDS will never provide your contact information to anyone.
When should I update registry information?
Updates can be done any time and should only take 10-15 minutes. But updates should be done at least every year, after any significant change in the participant’s health, and immediately after their 18th birthday. If the participant was enrolled in the registry as a minor, their data becomes inaccessible 30 days after their 18th birthday unless and until they are re-enrolled.
What is the purpose of the registry?
Researchers will be able to compare your answers with those of others. The researchers will then be able to detect patterns, identify common symptoms and gain insights into effective and ineffective treatments. Your answers will provide a better overall understanding of (insert rare condition) and how the disease develops/progresses over the course of a lifetime.
Our goal is to collect and provide valuable information and to speed up research studies of Refsum Disease and help start clinical trials for treatments.
The information you provide to this registry can help to:
• Drive research towards better treatments and possibly a cure
• Allow healthcare professionals and researchers to learn more about the disease
• Create a strong patient and research community
• Enhance treatment guidelines for patients to improve quality and management of care
Can data be collected worldwide?
Yes, the registry can be accessed all over the world with the link provided on our website. International participation is highly encouraged.
How is my personal information used and protected?
The information you provide will be provided to researchers studying (insert rare condition). RRP Patient Registry/CoRDS has put many safeguards into place to ensure that this information will be kept safe and confidential. The registry is compliant with the European Union General Data Protection Regulation (GDPR).
Why does RRP occur?
Beyond the previously noted risk factors regarding the transmission of HPV, it is still not very well understood why only certain individuals, present with RRP. It is estimated that approximately 5% of the U.S. population may have HPV in their respiratory tract, but less than 1 in 1,000 of those infected ever develop RRP. This seems to invite the speculation that some subtle immunologic deficiency affects the respiratory tracts of those few who develop RRP. In this regard, there are some interesting research studies indicating that in RRP patients some amount of killer T cells may be missing a key surface protein that normally would allow them to recognize HPV cells.
What are the symptoms of rRP?
The most common symptom of RRP is a voice that is persistently hoarse, weak, low in pitch, breathy, or strained. Often dysphonia (i.e., difficulty in speaking) or aphonia (i.e., loss of voice) can occur as well. Tumor mass and location (i.e., how the growths interfere with normal vocal cord function) may explain the degree of voice quality defects. For lesions that form near the vocal folds, hoarseness can occur very quickly with small lesions. As the disease progresses, shortness of breath can occur as the airway becomes blocked by bulky lesions.
Although this is more common in children, in some situations RRP can cause breathing difficulties in adults, especially during exercise. Young children often present with a weak cry, chronic cough, swallowing difficulties and stridor . Inspiratory stridor is noted by noisy breathing such as a high-pitched whistle or snore as a child strains during inhalation, usually as they sleep. This is indicative of an upper respiratory obstruction and warrants immediate attention by an otolaryngologist. RRP related symptoms may develop gradually over months or even years in mild cases, but in very aggressive situations symptoms may emerge in a matter of days.
How is RRP diagnosed?
RRP is typically diagnosed by an ear, nose and throat physician (ENT) performing an examination of the larynx. Some physicians may start with a mirror examination, which is done using a mirror placed in the back of the throat reflecting light down the throat and onto the vocal folds. More typically a doctor or a trained speech-language pathologist diagnoses RRP via an indirect laryngoscopy in the ENT office. This involves the placement of a flexible fiberoptic camera through the nose to further visualize the vocal folds in the throat or the use of a straight, rigid camera placed through the mouth that shines down the throat onto the vocal folds. In addition to allowing the ENT to view the larynx, a video record can also be obtained with these instruments. Some otolaryngologists or speech pathologists may use a videostroboscopy to obtain an even more detailed look. However, to make an absolutely definitive diagnosis of RRP a direct laryngoscopy (usually in conjunction with surgical removal of papilloma growths) must be performed in an operating room with the patient under general anesthesia at which time a biopsy is taken and tested for HPV.
In some cases the direct laryngoscopy is the only option, usually this involves young children in distress, where instrumenting the airway outside of the operating room might be hazardous. It is most desirable, however, to have a diagnosis of RRP before a surgical procedure so as to facilitate family awareness/expectations and so the anesthesiologist, surgeon and OR nurses will be properly prepared. Pediatricians who are unfamiliar with this disease often misdiagnose RRP. Many times shortness of breath and stridor are mistakenly assumed to be the result of asthma or croup. The consequences of these errors may be serious as papillomas are at least partially obstructing the airway to cause these symptoms and should be removed immediately.
For more answers to commonly asked questions, check out our child-friendly FAQs.