FSR created the FSR-SARC Patient Registry to give the scientists studying sarcoidosis patient-provided, real-world information from many patients followed over many years with different organ involvement, on different treatments, and at different stages of illness. The amount of real-world information at this scale and over time has never been available to those searching to find a cure for this disease. FSR’s goal is to learn some of the following: 

• Understand the cause(s) of sarcoidosis 

• Learn better or easier ways to diagnose the disease 

• Collect information on patients’ goals for their own health care 

• Identify new kinds of therapies that are needed and what health outcomes they should target 

• Understand the way sarcoidosis progresses over time in different patients 

• Learn the different ways doctors approach caring for someone with sarcoidosis 

• Provide access to some of your health records from different hospital systems or providers into a common location 

If you join the Registry, you will be asked to provide health information about your sarcoidosis. This will include: 

• Basic facts about you such as name, date of birth, gender, and where you live. 

• Disease information, such as: year of diagnosis or initial symptoms, test results, and medications.  

• What different parts of your body are affected (like your lungs, skin, eyes, heart, nerves, and more).  

• How sarcoidosis affects your quality of life and symptoms such as fatigue and pain. 

• New sarcoidosis medications, hospitalizations, and employment and insurance changes (gathered every year).  

• Surveys: we may ask you to answer new short surveys on specific sarcoidosis topics based on collaborations between FSR and sarcoidosis researchers. These are optional and voluntary. 

• You can choose to let the FSR-SARC Registry access your electronic health records from your provider’s online portal for up to one year into the future. This is optional and voluntary. If you do this, you will be able to look at your health records paired with your survey answers. You will be able to opt out at any time or choose not to reconnect your health records after the year period has ended. 

FSR works with a group called Across Healthcare. They use a tool called Matrix to help patients share info about their rare disease to help advance research. Matrix also protects your data and privacy.  

FSR works with a group called Across Healthcare. They use a tool called Matrix to help patients share info about their rare disease to help advance research. Matrix also protects your data and privacy.  

Anyone diagnosed with sarcoidosis is invited to enroll and join the FSR-SARC Patient Registry. You can also participate if you are a caregiver on behalf of a loved one with sarcoidosis.

Providing your information to the Registry and participating in this Registry is completely voluntary. Participation may not benefit you personally, medically, or financially but we hope that your participation may help others with sarcoidosis by increasing our understanding of this disorder, its causes, and best treatments. Researchers may learn whether and how treatments work and which patients they are the best for. You may benefit by opting to receive information about opportunities to participate in research, clinical trials, health advances and other news from the Registry.  

In addition, you will be able to learn how your disease and treatments compare with other members of the Registry whenever you go online and submit information. This will be done in summary form – you will not be able to see results of individuals in the Registry. By providing access to your consolidated electronic health records, you may learn about key features of your disease journey that may lead to specific conversations with your doctor. This may include comparisons of your health records to the health records from the larger group of Registry participants, or information about how the tests you have received compare to standards of care in the clinic.  

These summaries are intended to return value to you for your participation in the Registry and share potential impacts of your data on the larger community. This content is not intended to serve as medical advice and FSR encourages participants to discuss interpretations of all information in your health record with your health care team. You will not be paid based on participating in the Registry. 

If you join the Registry, you will be asked to provide health information about your sarcoidosis. This will include: 

• Basic facts about you such as name, date of birth, gender, and where you live. 

• Disease information, such as: year of diagnosis or initial symptoms, test results, and medications.  

• What different parts of your body are affected (like your lungs, skin, eyes, heart, nerves, and more).  

• How sarcoidosis affects your quality of life and symptoms such as fatigue and pain. 

• New sarcoidosis medications, hospitalizations, and employment and insurance changes (gathered every year).  

• Surveys: we may ask you to answer new short surveys on specific sarcoidosis topics based on collaborations between FSR and sarcoidosis researchers. These are optional and voluntary. 

• You can choose to let the FSR-SARC Registry access your electronic health records from your provider’s online portal for up to one year into the future. This is optional and voluntary. If you do this, you will be able to look at your health records paired with your survey answers. You will be able to opt out at any time or choose not to reconnect your health records after the year period has ended. 

Letting the FSR-SARC Registry access your health records is your choice and does not affect other ways you can participate, such as filling out surveys. We will collect information such as: 

• Clinical notes on your history and progress, consultations, and discharge notes for any time spent in the hospital 

• Current and new medications (including those for fatigue, pain, or insomnia)  

• Vital signs from your clinic visits (such as breathing rate and oxygen saturation) 

• Names and specialties of your healthcare providers 

• Results from your tests and procedures (such as blood or lung and heart function tests) 

• Other potentially related health conditions (such as new cancer diagnoses) 

We will not collect information that is protected by law, such as mental health, HIV status or history of substance abuse. The information collected is determined by the United States Core Data Set for Interoperability, a standard set of health data intended to allow for data sharing on a national level. More information can be found here: https://www.healthit.gov/isp/united-states-core-data-interoperability-uscdi. 

The FSR-SARC Registry will continue collecting data from participants for as long as they stay in the study. The study will continue as long as the Foundation for Sarcoidosis Research continues to support it. 

FSR-SARC is the keeper of the information held within the Registry. To meet the FSR-SARC Registry goals, we need to share some of your information with scientists and researchers, but we protect your privacy. This means that as soon as you join the Registry, the Across Healthcare Matrix platform will automatically give you a unique code number. Your name and other identifying information will immediately be separated from all the information you provide. This is called “de-identifying data” and makes your answers anonymous so no one can tell it is you. The link between your code number and your identifying data will be stored in a secure place at FSR and protected by a password. Only authorized FSR-SARC Registry personnel (the FSR Registry team and the Principal Investigator) will be able to access the code. Although the FSR team will be able to help you if you have technical issues. Across Healthcare Matrix staff will only contact you if you ask for help, although the platform will send automated reminders such as when a new survey is ready.  

All participants are protected through data privacy and security standards of the Health Information Portability and Accountability Act (HIPAA). If you are a resident of the European Economic Area (EEA), you have certain data protection rights under the European General Data Protection Regulation (GDPR). Participants have full control over the use of their data. Your Data Protection rights are outlined in FSR’s Privacy Policy, which can be found on this website’s privacy policy page: https://www.stopsarcoidosis.org/privacy/. 

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 anonymized data with appropriate permissions from all participants but will not be able to identify individuals. No identifiable information will be shared with anyone outside the FSR-SARC Registry (unless you give your written permission by email to share it upon specific request) or unless required by law (such as a subpoena.)  

FSR has a program called SARConnect  (https://www.stopsarcoidosis.org/sarconnect/), where we let you know of opportunities to join research studies and clinical trials. External researchers will not be able to contact you. Only the FSR Registry team will reach out with details about the study and how to reach the study team. The choice will be yours to contact the study team if you want to join the study. Participation in research studies and clinical trials is up to you and does not change your participation in the FSR-SARC Registry. If you do not want to hear about new studies, you can turn off these messages in your profile in the Registry platform.  

We might share your information with other sarcoidosis databases or new studies that help with health research. But we will use your special code, not your name. We will ask you if you are already in other studies, so we do not count you twice. 

FSR might write about what we learn from the FSR-SARC Registry data in books, journals, and scientific meetings. That may include your data, but no one will know it is you. The Registry staff may also use or share de-identified Registry data to generate revenue for FSR to support the Registry program. This may include partnerships with pharmaceutical companies interested in developing therapies for sarcoidosis. They may pay to partner with FSR to help recruit for clinical trials or to access Registry data to better understand sarcoidosis and its impacts. If this happens, only de-identified data will be used (without your name, contact information or other personally identifying information). 

You do not have to join this Registry. Participation is voluntary. You do not need to participate in this Registry to receive healthcare from your doctors. You may choose to join a clinical trial without participating in this Registry.

Currently the FSR-SARC Registry is only available in English. However, FSR plans to translate the study into new languages. If you have a language you’d like FSR to prioritize, please email registry@stopsarcoidosis.org.  

Using our registry, you can track your daily symptoms and activities on the platform, including seizure activity, movement episodes, medication or diet changes, ketone levels, doctor or therapy appointments, log medications, store important documents, and more! Use an existing favorites list or create your own symptoms and activities list to track those that are meaningful and important to you.