OPtIN: Online Patient Information Network
OPtIN is a patient community research platform; patients representing the interests of patients. It is a structured way of collecting and documenting patients’ characteristics, their challenges, their aspirations, their experiences in the medical system, their access to treatment, their response to treatment, their quality of life, and their needs; representing patients’ interests from patients’ point of view. OPtIN is run by the patient community. The topics of investigation are determined by the patient community. Access to data and research collaborations arising from OPtIN are governed by the patient community and reflect the interests of patients.
OPtIN consists of a core module which is similar to a disease registry in which patients provide basic information describing themselves and their disease characteristics and experience. The completion of the core module is step one of OPtIN.
Once the core module is complete, patients will be invited to participate in follow-up surveys on many topics. The topics are wide ranging and will include, as an example, patient response to different brands of colchicine, as a basis for establishing a colchicine registry to help patients optimize their access to, and response to colchicine. A preliminary study conducted within the patient community was previously published (it can be seen here) and is an example of research by the FMF patient community – research that is not being done by the medical research community.
OPtIN provides a formalized platform for the patient community to communicate with the medical community. Some surveys will assess the opinions of patients on medical care issues. Defining the factors associated with successful treatment outcomes will be investigated. Multiple subjects of interest expressed by the patient community will be pursued as survey topics. OPtIN is a research resource defining and expressing the needs, priorities and aspirations of the FMF patient community.
The results of each survey will be provided to the FMF community and there will be an opportunity for response and reaction to it through the FMF Foundation blog. The results of some OPtIN research may also be published in the medical literature when it is warranted to communicate with the medical community. Some OPtIN research will be reported through the media for the purpose of raising awareness of FMF and its patient community.
Who can participate in OPtIN?
The inclusion criteria for OPtIN are broad. Any person who has had a diagnosis of any auto-inflammatory disease that was entered into their medical record at any time can participate – even if an earlier diagnosis was overturned by a later one. The reason for which all auto-inflammatory disorders are included in OPtIN is because of the heterogeneity and crossover of symptoms among these disorders. Many patients with FMF have more than one auto-inflammatory disorder and some patients’ symptoms look like one disorder but the genetic variant is found in a different auto-inflammatory gene. It is not possible to draw a neat line between these disorders. So the broad inclusion criteria for OPtIN reflect the clinical variability inherent in FMF and its frequent crossover with other auto-inflammatory diseases. The analysis of data will take into account the different categories of patients and the range of auto-inflammatory disorders.
There is no age limit for participation. Children under 18 must be represented by a parent.
To join OPtIN, enter here to receive introductory materials: