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The future of congenital melanocytic nevi research is in your hands
No one understands congenital melanocytic nevi or associated disorders like those who live it every day. Share your expertise via the Registry to transform the search for valuable insights and better treatments.
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Despite the best efforts of passionate physicians and researchers, Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis remain poorly represented in the medical literature and lack many treatment options, both for quality-of-life measures and for more significant medical complications such as melanoma.​
You have the power to fuel research discoveries when you join NOOR.
Create an online profile, answer survey questions, and update your information over time to tell the story of how this condition has affected your life.
When added to the information shared by other patients, your survey answers will help us better understand this condition. The Registry also allows Nevus Outreach to show doctors and researchers the strength of this community and spur interest in treatment developments.
About NOOR
The Nevus Owners Outcomes Registry was developed to bring more information directly from patients to CMN research.
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One of the challenges of researching such a rare condition is finding enough patients in one location to power a study. This registry aims to pool patients nationwide to pool outcomes and experiences and power more meaningful studies.
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The data collected will be approved with the stringent ethical government regulations of the Institutional Review Board (IRB). Important outcomes and diagnoses will be verified with physician oversight. These extra steps in the Registry development mean the data will be research-ready, meaning your contributions can go directly from your computer to meaningful publications.
Participants will have the opportunity to contribute medical information and important quality-of-life information. This will help researchers study better treatments and gain valuable insights into our community's life experiences and the burden of disease. In short, this Registry is one of the most powerful ways to speed up research from the comfort of your home.
What happens once I join?
When you join NOOR, you become part of a community created to inform, support, and speed up CMN research.
However, our promise to you is that you own your health information. Participation is entirely voluntary, and you can ask to have your information removed at any time. We will never share your contact information or identifying information with anyone unless you tell us to reveal it. We also promise to honor your preferences about the type of information we send to you.
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When you agree to receive updates from NOOR, we will contact you a few times per year regarding new findings from the Registry and/or ask you to revisit your profile. Revisits may allow you the chance to update any information that has changed and/or respond to new questions. While not required, revisits can help researchers identify trends and eventually allow doctors to make predictions about how this disease can affect different people.
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Another option you will have when you join is to allow NOOR to contact you regarding research opportunities. Researchers will approach NOOR for help, letting patients know about studies in which they can choose to participate if they qualify. By telling patients about studies, NOOR ensures that studies make it to completion, leading to discoveries and treatments. Researchers are never able to contact you directly. If you agree to be contacted about research opportunities, a registry team member will send you information by email and tell you how to get involved if you are interested.
Understanding your Participation:
We are inviting you to participate in NOOR because you or a family member has CMN and/or NCM. We would like you to clearly understand what the Registry is and why we feel it is so important and necessary that patients provide their own medical, diagnostic and treatment history and views about how CMN affects their lives in order to help scientists understand and find treatments for CMN and NCM. Here, we will describe the purpose of the Registry, and the risks and possible benefits of participation.
Why is having a CMN patient Registry Important?
Because CMN and NCM are rare diseases, there has not been sufficient information collected on enough of those with the condition to fully understand risk factors (if any), fully understand the burden of disease or associated conditions, nor understand best treatments when needed. Too much is still unknown.
What we DO KNOW
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CMN occurs due to a genetic mutation during development
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CMN can occur anywhere in the body and nevi can be deposited in other neural crest cells, such a brain, eye, and spinal cord
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Some people have a reduced quality of life due to stigma, itch, temperature regulation, skin fragility and other quality of life issues
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CMN and NCM can lead to melanoma and be fatal
What we DON'T KNOW
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We don’t know the exact rates of melanoma nor if there are measures that may reduce the likelihood of developing this
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We don’t know if CMN or NCM are associated with an increased risk of other conditions such as developmental delay, autism, or learning disabilities
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We don’t know the best ways to treat complications such as melanoma if they occur
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We don’t know a cure for CMN or NCM
What information will be collected:
If you join the Registry, you will be asked to provide medical information about your CMN
We will want photographs of your CMN (and areas where your CMN was removed if applicable).
We will want any reports of associated medical diagnoses, such as MRI reports, biopsy reports, or melanoma treatments.
We will ask you to complete surveys to help us understand how CMN has affected your life. Once a year, you will be reminded by email to update your registry information regarding any treatments or new diagnoses, changes in health conditions, and repeat the quality-of-life surveys.
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HOW WILL YOU PROTECT MY INFORMATION?
NOOR is the guardian of the information contained within the Registry. We aim to help scientists answer important questions about CMN and NCM that might lead to a cure. To do this, we must share detailed medical information with scientists and researchers while firmly protecting your privacy. This means that when you register for an account, a computer will automatically assign you a unique code number. Your name and other identifying information will immediately be separated from all the information you are providing. This is called "de-identifying data" and makes the survey anonymous. The link between your code number and your identifying data will be encrypted, stored in a secure place, and protected by a password. Only authorized NOOR Registry personnel (the Coordinator and the Principle Investigator) will be able to access the code and identity of the patient.
WHO WILL HAVE ACCESS TO THE DE-IDENTIFIED DATA?
No researcher will have access to the identity of Registry participants, and they will not be able to contact any participant directly. They will be able to view the coded data (anonymous) from all participants with appropriate permission but will not be able to identify individuals. No identifiable information will be shared with anyone outside the NOOR Registry (unless you give your permission to share it upon specific request) or unless required by law (such as a subpoena.)
Through NOOR’s Physician Steering Committee, researchers with active Internal Review Board (IRB) approved research protocols may request NOOR alert Registry articipants of their potential eligibility. If you are one of the Registry participants who have elected to receive information regarding potential new trials AND NOOR believes, based on your coded data, you may meet study eligibility criteria, NOOR Registry coordinator will contact you with specific information related to that trial. Only participants who have given their permission to be contacted by the Registry will be contacted and only by NOOR. Those participants will receive an email or phone call from the Registry with information about the protocol and the Principal Investigator or Study Coordinator contact information. Each Registry participant will be responsible for contacting the new investigator on his or her own if they wish to learn more about the study or have further questions. NOOR Registry will not be responsible for the conduct of the new study. No participant is either guaranteed enrollment into a new study or required to enroll in a new study in order to join or to continue in the Registry.
Your "de-identified" coded information may also be shared with other existing CMN or NCM databases or yet-to-be-developed databases for the purposes of biomedical research. We will ask you if you are already participating in any other Registries or Databases so that your data will not be repeated.
About Us
The Mission of Nevus Outreach, Inc.
Nevus Outreach is dedicated to driving awareness, fostering a supportive community, and advancing research for people affected by congenital melanocytic nevi and related conditions.​