Patient Registry

Patient Registry

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As a patient, you hold the key to unlocking solutions — your information, your history, your BODY holds the answer toward a cure!

FSR-S.A.R.C.  (Sarcoidosis Advanced Registry Cures)

One major gap blocking the advancement of sarcoidosis research is a lack of PATIENT DATA. Until now there has been no repository to collect a large sampling of sarcoidosis patient data that is absolutely essential to researchers! This data includes patient basic information, medical history,  and even biospecimans – without this data and information, research essentially is stalled to purely theoretical studies. FSR has identified this need for patient data as an area of priority for our efforts. One of our main initiatives is the state-of-the-art patient registry: FSR-S.A.R.C.  (Sarcoidosis Advanced Registry Cures).

FSR has been selected as the sarcoidosis patient registry as part of the  Global Rare Diseases Patient Registry and Data Repository (GRDR). Launched by The Office of Rare Diseases Research (ORDR), the GRDR is a pilot program to establish collect patient clinical information without personal identifiers* for research. The full scope of the registry collects information from patients of a multitude of rare disease — however, FSR will maintain the sarcoidosis patient registry entitled FSR-S.A.R.C.  (Sarcoidosis Advanced Registry Cures).

The GRDR, including FSR-SARC, serves rare disease patients and advocacy groups seeking help and information. It also serves researchers developing new knowledge, clinicians treating patients, epidemiologists analyzing disease data, and investigators seeking patients for new clinical trials and initiating natural history studies. The goal of GRDR is to enable analyses of data across many rare diseases and to facilitate clinical trials and other studies.  A HIPAA compliant hosting facility provides a secure environment to protect properly consented de-identified patient information. 

By registering on the FSR-SARC patient registry, patients actively engage in the movement to find therapies and a cure for the disease.  A patient holds the key to unlocking solutions — your information, your history, your BODY holds the answer toward a cure! The registry is user-friendly and understandable. It takes only a small amount of time to complete and allows patients to continually update their information. All information is fully secured with full privacy ensured.  PLEASE JOIN THE FIGHT AGAINST THE DISEASE BY DIRECTLY CONTRIBUTING TO RESEARCH! A simple process can lead to incredible advances.

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*(de-identified information compiled by the federal common rule and HIPAA regulations)

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