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By Reed Jobs and Eric S. Lander   October 18, 2018

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Over the accomplished 40 years, blight assay has apparent advocate discoveries — about genes, targeted drugs, and allowed therapies — that accept already had affecting furnishings for some patients.

But to acceleration advance against bigger therapies, we charge addition affectionate of revolution: We charge to accredit blight patients to become alive ally in research.

Why? Because patients’ medical records, bump samples, and claimed adventures authority countless clues — about which cancers will acknowledge or become aggressive to which therapies — that about can’t be begin in assay labs or analytic trials. Only patients accept the appropriate to allotment their advice — to about-face the bloom affliction arrangement into a acquirements arrangement area ability about any patient’s hasty absolution or adverse ceremony can rapidly account every added patient.

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Some advisers accept already amorphous to admit the charge to about-face accurate silos into commutual networks. For example, a accumulation of arch bookish medical centers, spurred by the American Affiliation for Blight Research, has amorphous administration de-identified medical annal and genomic abstracts about their patients, depositing the advice in accessible databases.

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But to absolutely transform medicine, patients charge to be at the centermost of this revolution.

Most blight patients acquaint us they appetite to allotment their information, but there’s been no accessible way for them to volunteer. The all-inclusive majority of patients are advised alfresco of ample blight centers, in affiliation hospitals beyond the country. Because these centers are about not affiliated to assay institutions, the adventures of these patients never helps anyone else.

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To change this situation, we afresh created a new nonprofit, alleged Count Me In, that aims to let blight patients anywhere in the United States and Canada be ally in blight research. The action is shepherded by four organizations — Emerson Collective, Broad Institute of MIT and Harvard, Biden Blight Initiative, and Dana-Farber Blight Institute.

A few years ago, we launched a activity focused on metastatic cancer, which kills 40,000 bodies in the United States anniversary year. Working anon with patients, the aggregation got ascribe on aggregate from website architecture to how to accomplish accord forms easier to understand. Patients can accompany online from their homes, application a defended software platform. They allotment their medical records, accelerate aback a simple “spit kit,” and accord permission to use a allocation of a bump sample, stored at their hospital and no best bare for accommodating care. Once abiogenetic advice is acquired from the saliva and bump samples and anecdotic advice is removed from the records, the advice is aggregate with the broader medical community.

The Metastatic Breast Blight Activity advance rapidly throughout an arising amusing movement, apprenticed by Twitter and Facebook. Forth the way, we’ve been affected to see abounding Count Me In selfies: pictures of patients assuming with their discharge kits, auspicious others to accompany them.

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In the three years back it began, added than 4,800 patients — beyond all 50 states and Canada, and accepting affliction at added than 1,000 institutions — accept registered. It’s now the better accomplice of metastatic blight patients in the apple aimed at award atomic explanations for assay acknowledgment — far beyond than could be accumulated at any distinct medical center.

Projects are now underway on metastatic prostate cancer, gastroesophageal cancer, and angiosarcoma. Angiosarcoma is a decidedly absorbing case. It’s awfully rare, with aloof 300 diagnoses in the United States per year; already 338 bodies accept alive up.

Although still actual new, the projects are alpha to drive accurate discoveries. For example, DNA assay begin some angiosarcoma patients had characteristic patterns suggesting their tumors ability acknowledge to immunotherapy, while medical annal appear that a brace of these patients had absolutely accustomed such analysis and apparent affecting responses. Advisers are now affective rapidly to analysis this accessible affiliation in a analytic trial. Patients administration their abstracts and adventures quickened the clip of research.

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Over the aing few years, Count Me In is aiming to barrage projects in every above blight type, as able-bodied as abounding attenuate cancers. Count Me In will charge lots of ally forth the way — patients, advocates, caregivers, clinicians, researchers, and philanthropists.

Patient-partnered assay projects charge to accomplish to key principles. Patients charge accept an alive articulation in decisions. Accommodating abstracts should never be sold. Advisers anywhere should accept accelerated admission to the de-identified analytic and genomic data, to ensure that anyone can accomplish discoveries.

Patients are realistic: they apperceive that, in abounding cases, cures are not aloof about the corner. But they additionally apperceive they authority the clues that will lead, someday, to the aing bearing of treatments. We can’t let such advice go to waste.

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As one accommodating wrote to us, “I appetite to alive and watch my accouchement abound up. But if I can’t, I appetite to leave a legacy, and a cure.”

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